Thursday, April 28, 2011

Diary of a bereaved Mother: Tiki's song

I posted this on my photo site, but with the comments I got, I decided to post it here too. Hootin Annie said how poignant the photos were. I didn't plan it this way, it just happened, no children playing on the equipment. They are gone, gone to play the equipments in the sky.

I went to the Starship hospital recently to meet with Dr Salim Aftimos. http:

We talked about my late son Andrew and the future of my surviving children. Though the tears are gone, being with Dr Aftimos flooded back memories of the TLC treatment I received from him and his colleagues Drs Andrew James and Simon Rowley.

It was good to know that this artist Tiki had dedicated his song to the hospital, and that is has comforted parents like me who had lost their children.

Ka Pai Tiki.

Go to sleep, baby.
Close your eyes.
let the angels take you up into the sky

Go to sleep, baby.
Close your eyes,
let the rainbow take you up into the sky'

Sweet dreams, baby.

SWEET DREAMS: All proceeds from Tiki Taane's Starship Lullaby go to the Starship Foundation.

What started off as a calming song for Tiki Taane's baby boy has become a source of comfort for grieving families.

"I've had some tear-jerking emails from parents," the musician says.

Tiki has sung and played his guitar for his only child Charlie since the day the two-year-old was born.

Charlie started responding to the music when he was three months old and a few chords got him really excited.

"I decided I was going to write him a lullaby – that's where it all started," Tiki says.

He wrote and recorded the song and later decided to do something more with it.

He offered the tune to the Starship Foundation in the hope that it would raise awareness and funds – Starship jumped at the offer.

But he didn't expect the reactions he would get from patients' parents.

Lyrics such as `let the angels take you up into the sky' have been relevant for children who have died.

"Later on I realised it can actually be a sort of metaphor – taking your baby up to heaven."

Parents of patients have told Tiki the lullaby has become "their song".

They've also said it's been played at children's funerals.

All proceeds from the lullaby when it's bought off Tiki's website, go to the Starship Air Ambulance Service which flies medical experts to emergencies around the country.

After the Christchurch earthquake last month it flew patients out of the disaster zone in the first 48 hours.

Go to to purchase the song.

hootin--anni has a new meme.
IT'S ALL ABOUT MY NEW MEME THAT I HOPE SOME WILL FEEL LIKE JOINING IN ON THE CHALLENGE AND THE FUN [at least I hope the weekly challenge will be fun!]. It's loosely based on song lyrics [recorded songs since the beginning of time to today] and associating them with photos of I've done in the you click on the link above, it'll take you to the Meme's Homepage for rules and buttons. There will be a Mr. Linky Widget for each individual week also. Do consider joining me sometime. Hope to see it flourish in time.

Go to this link to watch a video of this song.

Tiki embarked on his solo artist career in January 2007 and has gone from strength to strength, becoming one of New Zealand’s most popular and diverse award-winning artists renowned as much for his powerful live performances as he is for his anthems.

Wednesday, April 27, 2011

Diary of a Bereaved Mother: Hospital

I spend a lot of time online, and had experienced joy when I get connected to unexpected person via another person. In February, whilst writing and researching for my book, I went to the cure kids site, and came to Stephen Robertson
Professor of Paediatric Genetics
Department of Paediatrics and Child Health
Dunedin School of Medicine
University of Otago

I wrote to him because his research was on skeletal disorders like CD, the syndrome my late son Andrew had. I was pleasantly surprised he replied: I think it is very important
that your experience and the diagnosis is reassessed and re-evaluated by one of my colleagues in Auckland,

If the diagnosis is re-confirmed as CD then the risk to your grandchildren will be very low.
have taken the liberty of copying in to this email my colleague in Auckland, Dr Salim Aftimos.

Presently I am in the UK on research and study leave but I hope my Auckland colleagues will be able to help answer your questions.
Best wishes

Dr. Salim not only replied, best of all, he was the very doctor back in 1989 who confirmed that Andrew had CD.
On March 2nd, I went to see him and it was lovely to see someone who 21 years was so good to me.

We remain connected and yesterday Dr Aftimos took me to a tour of the ICU. I had not been back for 21 years, and I garnered a lot of mental energy. They had relocated the hospital and up graded it, and that has made a lot of difference..

I asked a nurse Janny who was nursing when I was there. She told me that Daphne , Andrew's favourite nurse had retired and I was so happy to hear that she got married. I had a tinged of sadness his night nurse Betty had died.

God had arranged for Janny to be there. if I went 10 minutes later, she would have gone home. She read my book and she knew y friend, Gwen Bettridge. I gave my book to her to pass on to Gwen.

This week, as I revisit my friends who were with me during those days, we could laugh and there were incidences which I had omitted and I would edit for my first edition.

Diary of a bereaved Mother: Ad

My Church Mt Albert Baptist Church has a free community "Your place" website. I made use of it to advertise my book

newly published book
See all ads from annkschin
Diary of a Bereaved Mother.

A Christian mother's journey as she awaits her baby's death, her bereavement and her survival.

Foreword by Robyn and Jonathan Dove

Genre:Self help, infant death, bereavement

$20 from Ann,

$25 at The Women's Bookshop 1/04/ ml
Price: 20
Chin Ann
Send an Email

Tuesday, April 26, 2011

Diary of bereaved mother: Reviews

Here are reviews: 27 April 2011)

That's really great. A real encouragement to you. I have started to read the chapters... You have written from the heart- and God will use your book to bless many in their better understanding of life's difficult circumstances. You are brave in sharing your intimate journey of struggles with your son Andrew's birth and his very short life on earth. May God bless you, CO and your family. C New Zealand

Hi Ann, please let me know where I can buy your book. Just email me K USA

Congratulations on becoming a writer. Kalang & Liza Malaysia

wonderful. Praise God good job Ann keep it up. MP Singapore

Congrats budding writer. You have done well. DB Australia

Congratulations Ann, I'm so pleased for you. I read your book over Easter. It is so real and honest I know it will be a big help to others. I can't get over how much you went through you surely are a survivor. K NZ

Congratulations, I am so happy for you. God is good. C New Zealand

What fantastic news. We are very excited by this. I am reading it. It is wonderful. Sad, heartwrenching but wonderful. I was awake in the night, and I just couldn't get back to sleep so i picked it up and read for an hour in the middle of the night.
thank you for telling your story. it is so important for women everywhere.
god bless you immensley D & L NZ

so you have a book now to describe about your own struggling journey. i am sure there will be many mothers who share the same journey. congrats. will read more. SN Singapore

May the gift of writing from God not only enrich your own life but also enlighten other people's life.
May our Lord be glorified in what you have achieved. A NZ

Hi Ann, I hope your book sell well. I read it on your other blog briefly, its very detailed and really show the other side of you. Take care my buddy :) K Malaysia

Congratulations, Should approach hospital bookstore Dr MC Malaysia

你写的书很好,我现在已经推荐给我的客人看呢,希望更多的人能看到这本书。 ( Translated, I am leaving it for my clients to read. It is so touching?

Monday, April 25, 2011

Diary of a bereaved mother: My book shop

To the wannabe or aspiring writer, finishing the book is a hugest step. Getting it published is another gigantic step. Finally getting a bookshop to stock your book in monumental.

It is so exciting for me when I sold my book to The Women's bookshop They were the first shop I went to, and it was important that I didn't classify my book as a Christian book.

Thank you Carole for believing in me. Without proprietors like Carole, aspiring writers will find it very hard to sell their books and their zeal will be stifled.

Thank you. Gillian Tewsley, my editor.

My next book, here I come,

Friday, April 22, 2011

Diary of a bereaved Mother: Front page

The greatest tragedy
A white head buries a black head.
~Ancient Chinese Adage~

In the book of fairy tales,

Girl meets boy,

They fall in love,

They marry,

They have children,

They live happily ever after.

In the book of melancholy,

The owl hoots,

The crow caws,

A loved child is taken,

A hole in the ground,

The heart bleeds.

In the book of Christianity,

Reach out,

Cry out,

There is comfort,

There is healing,

There is light.

This is my story in a nut shell.

~Ann Chin~

Last night on Good Friday, my Church Mt Albert Baptist Church organised a pot luck Dinner and Movie night. We invited many ESOL students to celebrate with us. The advertisement in the local News Paper inadvertently published food provided. Some of us organising committee quickly made the decision to provide more food just in case people did come. We did have some coming because they read the ad and didn't bring any food. It was the quick thinking and reading of my friend Connie.

There was plenty of food, and it was an enjoyable dinner.

I read the above poem, translated by my ESOL student Annie Cui. Many came up and said it was a good poem. One asked where I got it from. I told them I wrote it.

This day was also the unofficially launching of my book. I gave my book to those who had supported me.

Diary of a Bereaved Mother

202 pages
Paper back.

NZ$25 plus postage

Color changed to Sky Blue.

Friday, April 15, 2011

Diary of a bereaved Mother: Chapter 5 part 3

25 September 1989,

I didn't sleep last night, I was coughing all night. I rang the Landscape Road Plunket. The Plunket nurse took me to Dr Lim's surgery. He was concerned about my weight loss. I had dropped in a week from 65 to 62 kg. I must have looked a mess.
He rang National Women’s to admit me. He said they may have to induce me.
There was protein in my urine. I had excessive amniotic fluid. The Plunket nurse sent me home to pack my bag and the girls stayed in the Landscape Road rooms.
There should have been alarm bells right from the first scan. When we read the scan reports after requesting them from the hospital after Andrew was born. I was very angry.
On 25th September 1989, Monday, I was admitted to Ward 5, referred to by my GP Dr A Lim at 38/40. I had been coughing for nine weeks, had a weight loss of 4.05 kg from 25 July and 2.2 kg on 7 July. I was vomiting and had insomnia and my overall weight gain was only 6 kg. I had ultrasounds done from 14 June 1989. There was a question of skeletal abnormality as the femurs were bent. I had four scans done in Greenlane Hospital, all with the same results.
There was protein in my urine, and I had a lot of water in my uterus. Subsequently I researched and found that excessive amniotic fluid (hydramnios or polyhydramnios) was a sign that babies are not normal, and certainly one of the warning signs of a Campomelic baby. Yet nobody picked up this. Andrew could not swallow, and this may have attributed to the excess fluid.
Dr Lim said they might have to induce me. I arrived at Ward 5 at about 10.30am and was met by the nurse manager who was having her morning tea. I explained that I had been losing weight and not sleeping and was vomiting. She said she would send a dietician to see me. I thought to myself, I needed medical help. I was a 35 year old woman with two children and was a sensible eater. Not an anorexic teenager. A nurse took me to a room where there were three other women.
At about 12 noon, a young doctor came and asked me a lot of information. I explained about my weight loss, my coughing, insomnia when there were days of little sleep, and over the past 10 days, I had not been able to keep food down. I felt anorexic and drank only water and weak tea. He felt my stomach, my chest and my back. The nurse came and got a urine specimen. I specifically told him about the four ultra sound scans I had had done at Greenlane Hospital and expressed my concern because of the bent femurs.
Then a team of doctors came under Dr Brown. He took a blood sample and asked a lot of questions. As I was a Chinese woman, they were discussed whether I had got tuberculosis and wanted to X-ray my lungs. I was concerned about getting an X-ray at this stage of my pregnancy. Dr. Brown ordered an urgent ultra sound scan. It was lunch time and the Nurse Manager wasn’t happy that I had to go to the Radiology Department without my lunch.
A student from Carrington Tech took me down to the Radiology Department where she waited with me until 2 pm. During the scanning, I told the technician about the four scans I had had done in Greenlane, which was just next to the National Women’s. It appears the technical staff were not told of these.
She said, “I am glad you told me, because I wouldn’t know what I was scanning for.”
During the scanning, I saw that the femurs were still bent. I was very upset because during the fourth scan at Greenlane, the doctor had told me that the femurs were straightening out and would be alright by the time the baby was born. Then a man came to scan me. After he finished, I asked if I was going to be induced.
He said, “It is not my position to say so.”
Then I was told I was to wait for X-rays to be done. I was very upset. Though I heard the doctors at Ward 5 talking about it, they had not told me. I kept asking the technician if it was safe and she assured that they do a lot of X-rays for women at this stage.
After the X-ray, I went up to Ward 5 by myself. It was 2.30pm. There was no lunch for me, but I didn’t ask as I didn’t feel like eating.
At about 5 pm, a Chinese doctor came and identified himself as a consultant. He was H Tan. He touched my abdomen, and asked three questions :
Why are you here?
Don’t you think your baby is alright?
Can’t you remember from your previous pregnancies?
I was taken aback by his abrupt manner. I explained again the same things I had explained three times already during the day and about the important four scans at Greenlane Hospital. He said he would have a 24-hour urine test and some blood tests.
The hospital report of the scan done had this discussion:
The differential diagnosis includes:
1: Osteogenesis imperfecta
2: Neurofibromatosis
3: Diastrophin dwarfism
4: Camptomelic/campomelic dwarfism
5: Congenital hypophosphatasia.
There were no definite antenatal features to enable a firm diagnosis of these. Post-natal evaluation is required.
Nobody told us of these, the delivery suite didn’t have my files when I came to the theatre, the paediatricians were not told. Andrew had Campomelic dwarfism. One look at him, and the paediatrician knew something was seriously wrong. They could have picked it up from the scans, BUT THEY DIDN’T. Somebody had failed me badly.
During tea, I forced myself to eat a little while listening to the other women complaining they didn’t have enough to eat. I offered them my food which they took and ate heartily. They then told me not to tell the nurses because they were diabetic and were on a strict diet. They joked that they get their whanau or family to smuggle food in for them. They teased me about where my puku or stomach was because I didn’t look pregnant.
I was coughing badly, and the patient next to my bed suggested I ask the nurse for some inhalation because it relieved her coughing. I asked the nurse and she brought it to me. I would not otherwise have been given anything for my cough if I had not asked. The other women laughed out loud and joked that the patient was a doctor. They were a jovial lot. They were Maori women and had a strong camaraderie because they were all in the same boat.
At 9 pm, the nurses pushed my bed to the Day Room. They explained that this was so the women didn’t disturb me, and also that I wouldn’t disturb them with my coughing. I am sure it was the latter. I was sad to leave these ladies whom I had grown very fond of. They were sad too, because it was like being sent to Coventry. Maybe I was sent there to be punished for having given them food. I didn’t sleep a wink because I was coughing the whole night. At 5 am, I asked the nurse about the urine collection, and was told to start at 6 am. In the morning, I was pushed back to my new friends. They joked that I was back from solitary confinement. These ladies were in the room for months, some of them confined to 24-hour bed rest. All they could do was to crack jokes. My baby wasn’t due for two to three weeks. I couldn’t foresee myself in the ward for such a long time.
In the morning, at 8.30 am, the doctors under Dr. Brown came. He asked if I had eaten and if I had vomited. I said I had eaten but I didn’t tell him how much I ate. They were discussing what to do about my cough. The Indian doctor suggested codeine. I was upset because I had read about codeine and its effect on blood clotting. Dr. Brown said I was ready to go home. I was shocked and I asked about the 24-hour urine collection, and he told me there was no need for it.
I felt very upset because I didn’t think the doctors had done anything for my coughing, insomnia and anorexia. The nurse came with a monitor for the baby. She asked me to press the bell every time the baby kicked. The baby didn’t kick. I was too tired and mixed up to tell anyone. In fact I did tell Dr Lim that baby wasn’t as active as the other two. I just dismissed it as being because I was busy running around for Gabrielle.
(Dr Lim should have picked this up and informed the National Women’s. Babies with CS do not move very much because they can’t move their legs. Last evening, I watched an American documentary on “The man with half a body” Kenny Easterday, the boy with no legs. I wasn’t surprised to hear his mother say that he didn’t move inside her. Doctors should not undermine mothers. Mothers know when things are not right; doctors should not whitewash the fact but carry out a thorough investigation.)
I told the nurse I was very very tired, I had had no sleep the previous night, and I had a four-year old and a 16-month-old baby. I asked if I could stay and rest. She said yes, I could stay until before lunch. Then I was told to come to the day clinic on 5th October.
When I read my discharge note, I was very distressed. It read, “Apparently private Radiologist suggested abnormality.” I had repeatedly told them that the scans were done at Greenlane. I had never been to any private radiologist. On the sentence ‘normal foetal skeletal anatomy,’ before the word ‘anatomy’, the word ‘abnormal’ was scribbled out.
The next day, on Wednesday, I consulted our friend, Dr. Bobby Tsang. I asked him to interpret the notes and advise me who to contact to express my concern about my short stay and apparently unsatisfactory care. Bobby advised it was the doctor who signed the form. Bobby rang Dr Brown and was told that it was a joint decision of Dr. H Tan and himself. When queried about the private radiologist, Dr Brown was adamant that Greenlane did not do ultra sound scans of that nature.
(Of course, Dr Brown was wrong. When I had Deborah, it was also Greenlane that I had gone to. I do not know what assumptions he had made or if he had not bothered to check with Green Lane despite me telling them three times. Despite having his colleague Bobby Tsang querying him, Dr. Brown had not investigated with Greenlane Hospital. Had he done that, he would probably have followed up my case with more care. )
At 5.30 am, 29 September 1989, I started contractions at 10-minutes interval. I had been up since 3 am. At 7 am, I rang the delivery suite and explained that my second daughter was born two weeks early. My labour was 35 minutes, and Gabrielle was a BBA or born before arrival baby. We arrived in an ambulance. They told me to come in view of this.
This time-line was sent to the hospital and Dr Tan. Dr James read it and said no wonder we were so angry. Dr James was very surprised it was so well written. He asked for permission to use it for student training and hospital policy.
We had scheduled a meeting.
17 October 1989, we met with Dr. Tan with Dr James and Wendy Green. Dr Brown was no show.
These were CO’s observations:
1: when asked about his writing, “Normal” in my notes.
Tan’s interpretation:
Whereas Brown took it as normal, he said it was solely Brown’s decision to discharge Ann.
2: Tan said he was not able to comment on Dr Brown’s action.
CO: Do you think that as Head of the team, you have the ultimate responsibility for your junior’s action?
3: Concerning Dr. Brown, we expressed our wish to meet with him, but such a meeting had not taken place.
4: The doctors had not taken the scan reports with differential diagnosis seriously, nor informed the delivery suite of the seriousness of the nature or prepared them when Ann came.
5: Did not appear to have investigated the case fully for themselves and told the patient everything was alright, even though the doctors knew something was wrong. Reassurance from the doctor(s) seemed without solid foundation.
This is unprofessional.
The report contained nothing new, it was a whitewash.
6: Did not bother to check with the patient how she was feeling, or whether baby was kicking during the period of observation. The observation period was next to nothing. It started at 6 am, and by 8 am, Dr Brown had discharged her.
Tan said, since the baby wasn’t due for two weeks they didn’t think it was urgent.
5: The Team did not take what patients tell them seriously. Ann had told them four times she had scans done in Greenlane. Yet no one had bothered to make a phone call to check.
6: Dr Brown did not follow-up our query through his colleague Dr. Bobby Tsang. This to us was very unprofessional.
Since Tan said he couldn’t comment on Dr Brown’s actions, we expressed through Dr James that we wanted to meet with Dr. Brown, We never did. Months later, when we demanded an apology from him, the hospital said he had gone overseas. He didn’t have the courtesy to inform us, or at least send a note.
We were not happy with Dr Tan, that he shifted responsibility to Dr Brown. We feel that as a team leader, he should be ultimately responsible for his subordinates. He disregarded the fact that it was him who wrote the words, “Treat baby as normal.” And for him to then blame it on Dr Brown was absolutely unprofessional.
CO felt that Dr Tan had been patronising. He treated us as though we were uneducated immigrants. What he didn’t know was that CO was a Dr Chin, PhD in engineering, and I had a couple of degrees up my sleeve from Canada and New Zealand.
The whole issue of my antenatal care left me with a very bitter pill. It would not have brought Andrew back, but at least I would have been better prepared psychologically and not have to hear these words.
“Your baby is dying tonight.”
I would like to have better investigations; perhaps I could have involved Dr. Rowley and my friend Dr Bobby Tsang.

Wednesday, April 13, 2011

Diary of a bereaved Mother: Chapter 5 , part 2

I got a note through my Social Worker, Wendy Green. It was from Carole Fleming, the secretary to the Medical Superintendent. She told me to collect copies of Andrew’s hospital records which she had photostatted. It was almost the end of the day when I got the note and I went to collect them. I quickly turned to those entries done on the 25th September 1989. The Monday when I was admitted to the ante-natal ward.

I went back to Ward 11A and perused the entries made by Dr Tan, the consultant who examined me on Monday the 25th. I couldn’t believe my eyes.
Dr. Tan wrote: scan – no evidence IUGR (intrauterine growth retardation)
-- no firm evidence of any bone abnormality.
Plan - Treat baby as “normal”
I felt sick to my stomach. I didn’t know what he meant by IUGR, intrauterine growth retardation but I remember Dr. A Lim telling me that the scans showed the rest of the body was much smaller than the head. I knew what Treat Baby as “normal” was, -- he didn’t do anything. It was I who had to suffer from this negligence. I sat down to write down the time-line for Dr. James. He asked me to write about myself and my pregnancy so that he and the doctors would know me better, and to present my case to the hospital.
Deborah: Date of birth 8 December 1984. Gynaecologist Dr Bruce Conyngham. We chose a private specialist because Ann was twenty-nine, and this was her first pregnancy. Conception as planned. Pregnancy and labour uneventful. Deborah was thirty-nine weeks gestation.
Gabrielle: Date of birth 5 May 1988. Under GP Lim. Ann was under Dr Lim for more than ten years. Conception six months after planning. Pregnancy uneventful. Labour and delivery was very quick, only thirty-five minutes while she was still working at the Accounts payable Department at the Auckland Hospital. Thirty-eight weeks gestation.
Andrew: Date of birth 29 September 1989. Under Dr Lim. Conception not planned. Ann’s pregnancy with Andrew.
Last menstrual cycle: January 1989.
Bad nausea in February, but pregnancy was not suspected as menstrual cycle was irregular since weaning Gabrielle in August 1988.
28 February 1989, first appointment with Dr. Lim, pregnancy confirmed.
Dates uncertain.
28 March 1989, second appointment. Dr Lim informs that he was going for a nine-week holiday. His locum will take care of Ann in his absence.
24 April 1989, third appointment. Dr Raymond Chen. He was a young man and was concerned about my bad nausea. I had no weight gain and he requested an ultra-sound scan. My weight measurement by the clerk was 55.6 kg. Dr Chen was concerned. There was no cause for concern.
8 May 1989: 1st scan at Greenlane Hospital, Epsom.
The young technician took an exceptionally long time. He didn’t discuss it with CO or me. Then Jessica, a more experienced technician took over. She came back with Dr/radiographer. Again they scanned a long time. It must have been more than an hour.
They told us, because of the way the baby was moving around, it was very difficult to scan, and made an appointment for another scan in four weeks.
Official report: A less likely possibility is that this is a real finding, perhaps due to some kind of dwarfism such as osteogenesis imperfecta. For this reason we have recommended that the patient return in two week’s time for a further examination but if there was a family history of dwarfism then more urgent action such as an ultrasound examination by an independent operator is recommended. E. Steele
22 May 1989, Saw Raymond Chen, still nausea. Dr. Chen made no mention about the scan, just said, awaiting repeat scan results.
14 June 1989, ultra-sound scan. I went alone. Scanned by Jessica . Saw the two bents of the femurs at different locations. Two doctors came and asked if I had fallen at any stage. It was a possible explanation that I had fallen and broke the baby’s bones and they reconnected. A follow-up appointment was made for four weeks.
Report: Osteogenesis imperfecta may have to be considered.
E. Cadogan
22 June 1989. Dr Lim came back, I was still nausea. I queried about the scan. He said, “Can’t tell if there is any problem, there is no prognosis at this time.”
3rd Scan. Went with CO. I told Jessica that baby doesn’t seem to be moving like my other babies. Jackie had a list of things to scan as instructed by Dr Alistair Roberts of National Women’s. We had a quick look. Other skeletal defects, in particular: spine, jaw, limbs, various length measurements, ossification which is the process of the synthesis of bone from cartilage.
The femurs were still very bent.
Jessica went to consult the doctors.
The doctors came and Jessica did more scanning. She said all the rest of the body was normal.
“I am sure the baby is perfectly normal, when baby is born, let me know and I will come and visit you.”
Another appointment, and then a follow-up appointment for every four weeks according to Alistair Roberts.
Official report: Pre-natal bowing due to foetal packing is a possibility, as is osteogenesis imperfecta. A repeat examination in four weeks’ time is suggested.
J Mawwson
10 July, Saw Dr Lim, nothing eventful.
14 July 1989. Fourth scan. I went alone. It was a different technician and doctor. Saw the kink of the femur had actually straightened a little or was less bent. It was a quick scan by the doctor, presumably by Dr. N Black. He said there was no more scans unless A. Roberts or Dr. Lim requested it.
He said it would save my time, not having to go to Greenlane.
The scan which measured the baby’s head was 31 weeks, and the rest of the body was 28 weeks of development.
It seems likely this represents a variant of normal but significant pathology cannot be excluded on the basis of ultra scanning alone and follow-up of the baby after birth is required. I note that the patient is now under the care of specialist at National Women’s Hospital and further scans at Greenlane do not seem necessary.
N. Black.
(I was never under any specialist in National Women’s. I don’t know how Dr Black made this assumption. He could have been the first in the chain of my mismanagement. I had never met Dr Alistair Roberts. After I got the report, I asked to see Dr Black him for an explanation. He never showed up or even wrote an apology. After Andrew was born, we were told Dr Roberts was the doctor in National Women’s hospital that the Greenlane doctors had consulted. Unfortunately, he had gone to America and nobody followed up with him. It was incredible that I could have such a seriously problematic baby; yet we were kept in the dark, and right up to four days before my baby was born, I was assured that I was having a normal baby.)
July 1989, I saw Dr Simon Rowley for Gabrielle at the Landscape Plunket Road rooms. I told him about the scans and he said he would see the baby when he was born. I should just tell the delivery people.
10 August 1989, Dr. Lim. I had a cold from July, there was no medicine and he didn’t mention about further scans though I was worried and asked him about it.
18 August 1989, Dr Lim. I asked about the scans. He said maybe baby was bow-legged. It was strange that the femurs should be bowed/bent at different places. Or baby might just have short legs.
24 August 1989, Dr Lim. I asked him about the scan report. Baby has a big head and short legs, which conjured ideas of a midget.
I pressed on about his head measurements. He said, his head from ear to ear was still within normal range, just his legs were short.
There was no need to worry. Still there was no prognosis.
He would request a paediatrician after delivery.
I told him about CO’s nephew who was Down Syndrome and still couldn’t walk at three.
I was already having a cold, was not eating and the cough was preventing me from sleeping. He prescribed Amoxil and Gee’s linctus.
30 August 1989, 4 September, 13 September, 18 September,
I continued to be sick, my weight was dropping. I was seeing Dr. Lim on a weekly basis.
21 September, I was very sick and rang Pregnancy Help. They came and took me to Meadowbank’s Plunket because the Landscape Road Plunket couldn’t take me. I vomited in their car. The Plunket nurse saw that I was very unwell and suggested I see the doctor or at least to let the doctor know.
I rang the doctor’s nurse and told her my condition and explained that the Plunket nurse was very concerned.
The nurse at Dr. Lim merely said, “Wait till tomorrow; if the condition still persist, then come in to see the doctor.”

Diary of a bereaved Mother: Chapter 5 part 1

Chapter 5

11th October 1989 Time-line

Beware of what you put pen to paper,
For when it is in black and white,
You can’t deny what you had written.
It may come back to bite you.

After Andrew survived his 10 days, I started to doubt the doctors. I remember reading the Readers’ Digest stories about mothers who defeated all odds and saved their loved ones. I thought to myself I did not fight for him like those mothers in the Readers’ Digest. Here I was, nothing but a loser who gave up so easily, unlike the heroic mums I read about. Now I wanted to fight for him. I asked myself if I could cope if he lived on and couldn’t eat solids, couldn’t crawl, couldn’t move and worst, if he was intellectually handicapped. I rationalised that if those mothers could do it, so could I. I said God would work a miracle, and Andrew would become a complete child.
It’s 7.55am, the girls are in the crèche. The nurse told me that at 4am, Andrew had cyanosed, which meant he had turned blue with discoloration of the skin, fingernails, and mucous membranes caused by gasping for air for 10 minutes. It happened half an hour after his feed.

We were in a meeting in the medical library. I told Dr James that I had changed my mind. I wanted full medical intervention. He touched my hands and told me those Readers’ Digest mothers were different. If Andrew had any glimmer of hope, Dr James would fight together with me to get him well. But Andrew in all aspects had no hope of survival. I told CO too, and he reacted the same way. I was really confused.

CO said he didn’t have the strength to take care of a handicapped child even if he wasn’t so severely handicapped as Andrew. It was like a bucket of ice cold water had been poured on my head and dampened any hope I had.

Andrew had not spilled since his 9 am feed after they reduced his feed. But in the afternoon, he cyanosed again. The nurse was experienced and gave him a dummy half way through the feed. He got upset again. Then the nurse stopped his feed to get him to settle. I fed him again when he settled again. He got upset again and cyanosed. The nurse said to stop feeding for the moment, and she would top it up. She gave him a sedative in the tube. This nurse Jane was very experienced. I had not seen other nurses doing it. Using the dummy became part of his routine. This dummy is made of soft rubber which is different from the shop bought one.

I wanted to stay in Ward 11A that night. Nurse Jane was very understanding. No mother who sees her baby cyanosed is not affected by it. I touched his mop of hair. I wanted my mum. I wanted her to tell me it was alright. But Mum is buried across the ditch in Australia. Mum was there when my eldest sister gave birth to her oldest child. Mum was there when my second sister gave birth to her daughter. I thought of the Chinese song that mum used to teach us, titled “Mum is the best.”

I taught my niece Emily to sing this song and she dedicated it to my brother Charles. It is a lovely song.

Mommy's the only dearest in the world

You can click on this link to hear it.

Monday, April 11, 2011

Diary of a bereaved Mother: Chapter 4

6th October, 1989

A nice soft bed,
It might as well be a hard concrete floor,
For it gives no rest.

The Nurses Home became a second home, but all I remember was going to sleep which never came, waking up early have breakfast, wait for some nurses at the other end of the dragon as it was 6.00 am, and still too dark to walk outside. Sometimes, when there were no nurses, I just entered the dragon alone. I prayed to God for safety.

A nurse took me down to the crèche. (Later, Betty, Andrew’s night nurse told me it was her, only I was too spaced out to remember.) The supervisor was a young Maori woman, Andrea Morris. She said, there were hardly any mothers leaving their children so it would be fine to leave Gabrielle aged 17 months and Deborah aged 4 ½. She was sure that the girls would be fine. There was another elderly Pakeha or European woman, Cathy Thompson. I think she was a volunteer and she came twice a week. In my notes, I wrote of a Margaret Smart, but I have no recollection of who she was.

The crèche was very big, but very sparsely decorated. I think the hospital gave the space, and paid the wages for Andrea. The rest of the toys were donated. There was a little tea room at the back. I don’t remember where the babies slept, but I think there must have been some sleeping spaces or there were mattresses. If Gabrielle had her daily nap, it was trivial where she slept.

Andrea suggested that Deborah and Gabrielle come in the morning, and at lunch I would take them to Oliver’s. After lunch, we could go for a little walk, and come back to the crèche. Gabrielle has her nap, I take Deborah up to Ward 11A for our Andrew-Mum-Deborah time. Round about 3 pm, I take Deborah down to Andrea. By then, Gabrielle would be awake. We have afternoon tea. I go back to Andrew. CO comes after work at 6pm, we all go to see Andrew, and have dinner at Oliver’s. CO paid for his own meal. It was good, at least we were a family having a meal I didn’t have to prepare and cook. We had a rest in my room upstairs, and then they went home to sleep. I went to spend time with Andrew until the nurse told me, time to go, you need your rest as tomorrow will be a long day.

In the afternoon, Andrea told me, “Good news, the hospital decided I didn’t have to pay for the childcare.”

I don’t know why, because I saw other mothers paying when I was there. This was a great relief. God took care of that financial problem.

This seemed all very well, but nothing is smooth sailing when your ship is sailing in uncharted waters. I didn’t really want to spend too much time away from Andrew. Yet at the same time, I knew the girls needed me. My heart and my time were divided, and it was as if claws were clawing and digging into my heart and causing it to bleed.

I used to really like the song, “Seek ye first the Kingdom of God.” But at this time, it seemed that God had forsaken me. How could I seek him first? There were a lot of anger issues with the obstetric team of doctors. Dr James told me to write a time-line of my life. He would arrange with the hospital to get a meeting with the doctors. He also sent me up to the hospital library to do research on Campomelic Syndrome. It was ironic that some of the students who used the library thought I was a doctor.

Ward 11A had six mini nurseries, they were more like cubicles. The first two were the top priority ones. Those had babies in incubators and heat tables and with tubes and wires attached to their bodies. Then it went to nurseries 3, 4, 5, and 6. When Andrew came back to Ward 11A, he was in 4, but as he was a non priority case, it didn’t matter. They were just providing him with board and nursing care. Not medical care. The doctors still came to see him every day.

One morning, his cot was empty. I cried. I thought Andrew had died. I was angry they didn’t contact me. I had left notes for them to call me when he was dying and I would be down from the Nurses’ Home in a flash.

A night nurse came and said, “I am sorry….”

I couldn’t listen any more. I was shaking all over.

She touched my shoulder and repeated, “I am sorry we didn’t tell you, we moved him to nursery 6. We should have told you or done it when you were here. We were less busy in the night, and thought it was a good time to move him, as the morning nurses were always so busy.”

I literally let her lead me to the last ward. Andrew was there in the corner, the first cot at the entrance.

I cried and told him, “I thought you had died without saying good bye to me.”

That moment when I saw his empty cot and thought he had died, my heart stopped too. It was as though I had died with him.

It took me a long time to settle down. A nurse brought me a cup of hot tea, to calm my nerves. I thought to myself, would this be how I would react when it actually happened.

A senior professor came and asked if I would talk to some students because Andrew was such an unusual case. There were three young students and there was I telling them lots of things about CS, and showing them all the parts of Andrew. I actually spoke a long time. Andrew’s nurse came and told me quietly that I didn’t have to do this if I didn’t want to. I was emotionally drained when I finished. I don’t know how much the students took in, or what they had to know about CS. I remember the old professor coming to thank me, and apologizing that he hadn’t make it clear that all he wanted me to tell the students was the psychological side of a mum faced with a baby with a terminal situation. He didn’t expect me to tell them the clinical facts. Andrew’s nurse must have complained that I was subjected to such a horrific situation.

Charge Nurse June made a beautiful management care plan for Andrew. She decorated it beautifully and put it on the wall. She did it in her own time that Sunday and the nurse told me that no baby had ever had the charge nurse do this. I thanked her for this and she said she wanted to do it for Andrew.

Throughout this time, we expected Dr Tan and his junior Dr Brown to come and see us. But they never came.

We were scheduled to have our first official meeting with Dr Tan and the hospital. Dr Tan didn’t have the guts to attend the meeting. He asked Dr. James to represent him and the hospital.

Dr Tan’s no show infuriated me. Why couldn’t he say, “I am sorry” since he made a blunder? And he couldn’t even say it to my face?

Now, even CO was angry that Dr Tan treated us in a patronising manner. No doubt Andrew was a terminal case, but had Dr Tan done his homework and followed it up, he would have been wise to inform the delivery suite and the doctors to be prepared.

At the meeting, we requested Andrew’s notes so we could investigate further.

I asked Dr Armstrong, the paediatrician, if Andrew would have died then if they had done nothing to him. Dr Armstrong said the answer would probably be yes, as the doctors gave him oxygen and helped him breathe. Would it have been better he had died then? It certainly seemed so when I was in pain sitting and waiting.

Deborah and Gabrielle had adjusted well in the crèche. Andrea was a very good supervisor. On the first day, when Gabrielle kept crying, Andrea took a Tommy Tippee turtle toy and spun it across the floor. Gabrielle stopped crying and went about 20 feet away to pick up the turtle, retrieving it for Andrea for her to spin it again. Patiently Andrea repeatedly entertained her this way, until the friction of rubbing it against the floor was scraping the colour off. I think Andrea must have been tired of this game, as she told Gabrielle that turtle wanted a rest. It continued to be Gabrielle’s favourite toy. She played with it by herself.

After Andrew died, we went to see Andrea to say goodbye, she said the turtle was too scratched; otherwise she would have given it to Gabrielle.

Six months later on May 5th, 1990 Gabrielle turned two. I made her a turtle jelly cake because she was allergic to dairy products and eggs so couldn’t have an ordinary cake. I bought her the same Tommy Tippee turtle. She was very thrilled to have it. She remembered the good time she had with Andrea. But it cut into my heart, that turtle belonged to the time when Andrew was alive. That turtle was more for me than for her. We brought the turtle to Singapore.

In 2005, Gabrielle came back to New Zealand to study her last year of high school. Before we came back in July 2006, a sister of my British neighbour came from the Philippines. She ran a Street Kids program in Manila and had asked for good old clothes and toys. I had packed away all my clothes and toys I didn’t need any more. Before I sealed the box, I held the turtle, Gabrielle’s turtle. I wanted to keep it the way I kept Andrew’s dog. It was a very emotional time. I decided against keeping the turtle. I reluctantly put it in the box. Some kids in Manila could have use out of it.

One day in 2007, I saw the same kind of turtle in a Salvation Army Op Shop in Auckland. I have this feeling that you would not understand. I am back to the city and country Andrew was born, and there was the turtle reminding me of that fateful time. I bought it and gave it to Gabrielle. Gabrielle had since moved out of the house and gone flatting. I asked her if she still had the turtle. If she didn’t want it any more, I wanted it back and I gave this part of my manuscript for her to read.

She said, “Mum, you can have it.”

Deborah was doing well in the crèche with Andrea. One day she came up to the ward to give Andrew a picture she had made. She had drawn her family photo. When I saw it, I cried. She drew Andrew as a baby floating above us. She had glued onto him a blue Chinese conical hat. The rest of us were standing firmly on the ground. She told me that she stuck the hat on because Andrew was a Chinese boy and he was up in the skies because he was an angel. To her, it was a good picture. She had in her own way accepted that Andrew was going to die and he was going to be an angel. We pinned the picture above Andrew’s cot, and she proudly told everyone that her baby brother was going to be an angel.

One day, Deborah was very excited. Some kind ladies had knitted lots of little dolls for the hospital and left them at the crèche. Andrea told her to bring one bag for Andrew, and one bag for the rest of the little babies in Ward 11A. There were more than 10 dolls in Andrew’s bag. She chose a doll that she wanted to give to Andrew, another for Gabrielle’s gift to Andrew, and finally mine. She chose the one I liked very much. She chose one for herself and one for Gabrielle. Then she confidently went to all the other six nurseries to distribute them to the rest of the ICU babies.

When Andrew died, I asked his nurse if she would pack a doll for him to take it to Heaven, meaning it would be buried with him. I was very happy that Nurse Daphne chose the one that I had given him. She kept the puppy dog, as she knew I wanted to have it back. Whoever those ladies were who knitted the dolls, I wish I could thank them. I hope all the other babies that day survived and took their dolls home.

On 16th December, 2010, Mrs. Nesbitt, one of my British blogging friends, posted photos of knitted dolls of the Nativity scene. She invited readers who wanted the patterns to tell her and she would email to them. One of the dolls was Mary holding Jesus. It looked very similar to the doll I gave to Andrew. I told her I was interested in her patterns, and would explain why I wanted to knit one. She sent them to me the next day. It seems so strange that after 21 years, I get to see a doll that meant so much to me and at the time when I am writing this book.

November 10th, 1989.

CO and my relationship were volatile. We didn’t argue in public, we always went to some place where we were alone. One morning, he was late in coming to drop the girls. I was upset waiting at the lobby for them because I wanted to be with Andrew. If I had had a passport, I would have taken the girls and flown to Australia to be with my Dad and leave Andrew and CO. I had had enough.

That night, I wanted the girls to stay with me in the Nurses’ Home. CO must have protested but I didn’t care. I didn’t want to see him any more. I told the girls that they would have a sleepover in my room, but we had to be very quiet, otherwise the friendly Mrs. Cherry Thompson would come and chase us out.

I didn’t know at that time that whanau or family were allowed to stay in the room too. You see, to the Maori, whanau was very important. We only had a single bed; both the girls were crying. Deborah was afraid Gabrielle’s crying would alert Mrs. Thompson. The bed was too small even for them. I caressed Gabrielle and cried myself. I had taken the first step to leave my husband.

I couldn’t sleep a wink. I stared at my daughters; I stared at the family photograph when we were once a happy family.

I cried, “God, where are you when I need you so desperately. You are so far away.”
I did what I normally do when I can’t sleep. I got out my writing pad, but I couldn’t write. God must have told me to write a letter to CO, to tell him I loved him.

I wrote,
My dearest husband,

I love you. While my head wants to escape all this, and run away, somewhere at the back of my head tells me that this is the worst thing to do. But knowing my pride, once I have left, I am not going to come back.

Please, please, for my sake, for our sake, for our daughters’ sake, when I say, I want to leave, do not reply and retaliate saying, “Go!” Just as you did yesterday, even though your intention might be to jolt me to my senses.

Instead, hold me tight and ask me to stay. Tell me that you need me, tell me that Deborah and Gabrielle need me, and Andrew needs me. Tell me that I am needed for this family.

Right now, I am at the top of a crumbling cliff contemplating if I should jump. I need you more to hold me back from jumping or hold me back from escaping. It must have been God’s plan that I haven’t got a passport. It is no empty threat. If I had a passport, I would go to Australia. I would take the girls to Father. I won’t come back, in this state of mind; even if Father and Charles persuade me to come home, I will not. My pride is too great. It would be up to you to beg, to kneel and beg me to come back. Not even if you fly to Australia, will I come back. NO! NO! NO! I can’t take it anymore.

The only thing stopping this flight is Father. I don’t want to upset Father. He is still grieving for Mother. I am sure he will take me in, but it is not the right thing to do.
Olwyn says we both have our pride; we both need to work on it. Both Wendy and Olwyn asked me how we met. I told Olwyn, I was going to Palmerston North, I wasn’t meant to come to Auckland. Everything was so strange that I should have my plans change and come to Auckland and meet you. Would I have met you if I had gone to Palmerston North? Would I be in this hell hole?

God had different plans for me.

Thank you for standing by me right from when we started our relationship.

Thank you for being there when I had that breast operation.

Thank you for standing by me when we had Deborah.

Thank you for standing by me when I had the operation when I had the breast infection.

Thank you for standing by me when I fell so sick when Deborah was weaned; when most marriages would have broken up.

Thank you for standing by me when Mother died.

Thank you for standing by me when I had the difficult pregnancy with Andrew.

For all these, I praise God for you.

Now, however, I need more than standing by me. I need you to hold me up and prop me up.

Last night, I had enough of this rocky road, I tried to have a reconciliation. Instead our talking made it worse when it became a shouting match. I spoke to Don, I felt better. After the meeting with Dr. James and Wendy, I felt good. I felt really good after Dr. James looked at Andrew’s charts and came and told me that my observation was right, I told the doctors that when the nurses used the bigger nasal tube, Andrew was always sick. Now, they will always use the small tube. I just felt good because it sort of showed to Dr. James and everyone concerned that I didn’t just make a whinging comment.

Please darling, you are the most important person in my life. I want to hold you, to touch you. But something is holding me back. That something tells me you are the cause of all my trouble. That something makes me feel repulsed at the sight of you. That something is very sinister, it is from the Devil and he wants to break our marriage up.
But I actually want you to hold me and touch me as well. Though at this time, I don’t want you to kiss me. I will let you know if I want to or not. Please let me hold you.
Please, do not turn me away. Hold me tight.

Olwyn told me her paediatrician brother took care of a Campomelic child in Australia. The baby lived for four months. My God, I hope Andrew is not going to live that long.

Andrew is like a tunnel, only it has no opening at the end. There are lots of obstacles that we keep banging into. We don’t know how long it is. Please help me walk together in this dark dark abyss. Please don’t let me stall at any of the hurdles.

I love you. Let me clarify my request that when you see me in the morning to first ask how Andrew had been and how I had slept. This is not to DICTATE to you what to do, but for you to GAUGE my feelings, my state of mind.

Last night I did not sleep a wink. I was up writing this letter. It is 5am. I am very upset.

At this moment, and in my current state of mind, I feel no emotions for you. I still don’t want to see you. I know it is wrong and unchristian-like. The evil force is lurking, and ever ready to pluck me away from you and from God. I need you to help me.

I love you.


Saturday, April 9, 2011

Diary of a bereaved Mother:Chapter Three part 2

The Tunnel.

Is life's journey a series of tunnels?
You never know how long you have to walk,
You never know when there will be light.

Then there was this tunnel or maze which played a very significant part in my life. The nurses used to get to the Nurses’ Home when they ended their night shift at 11 pm or started their morning shift at 6 am. They told me that while this was a longer walk, it was much safer, and more comfortable if it rained and in winter time. They also suggested that I not walk alone because it could be quite scary, and one never knew what weirdoes may have sneaked into the tunnel. The nurses always walked in twos and threes. They advised that if I left Ward 11A at around 11 pm, and waited round the entrance of the tunnel, there were bound to be nurses heading back, and it would be safer if I joined them.

In November 2008, I started blogging and made many online friends. On October 30, 2010, it was Halloween, and many internet memes I had joined were featuring on this theme. I don’t believe in Halloween and didn’t post ghosts and witches’ photos. For the topic ‘dark’ I posted a photo of a tunnel of my local Westfield shopping mall, making it black and white. It turned out very effective as a dark and fearful picture.

I didn’t make the connection to the tunnel of 1989, but when my fellow blogger Ginny commented that it was like a hospital corridor, her comment opened up a flood gate of memories. She seemed to be able to read my mind despite the fact that Ginny is thousands of miles away in the USA.
Here is the link to it. As a picture tells a thousand words, no matter how I describe it, I can’t beat the photo. You may like to view it.
When I walk through this tunnel-like walkway, I am reminded of my friend Gwen Bettridge telling me," There is always light at the end of the tunnel." This was during her visit to me when Deborah was born.

She said, “There will be sleepless nights, there will be piles of laundry and nappies, there will be piles of dishes unwashed in the kitchen sink”
It seems I had unconsciously posted that shopping mall tunnel which resembles another tunnel which had been etched in my mind. Twenty-one years ago, my son Andrew was born, I chose to be with him until he died. The hospital kindly gave me a room in the Nurses' Home.

The block was quite a distance from the baby's ICU, and was connected by underground tunnels like a maze. If you missed a turn, you could end up in another block and be lost. When I walked past what the nurses call the groaning dragon, the boiler, I wanted to walk quickly as the dragon not only groaned; it shook and created an earthquake. Every day, for almost 50 days, I walked this tunnel twice. It was not a walk I would wish for anyone.

On November 21st, I walked that walk for the last time. The next day, I left the hospital's main entrance with empty arms.
Ginny, I had not shared this with anyone, not even with my husband. Today, I am sharing this with the whole wide world.

*Oh, Ann, I am so sorry. Your comment has moved me to tears. I have walked a lot of hospital corridors in my time, and I just had the strangest feeling about this one. Overwhelming sadness. Sadness in sympathy for you, which I did not even know at the time. Also what is so strange is my post I have planned for tonight, which is about babies who have passed away. Many blessings, Ann. Ginny*
*This is a wonderful photo for this theme. I'm sorry to hear about the loss of your son. George*
*Oh Ann, This is heart-wrenching... I am so sorry... That had to be a low point in your life.... We all walk through the tunnels of life -- and they are hard. BUT -- there is LIGHT at the end of the tunnel... God Bless You, my friend.
CO was on a working trip to Singapore. I was at home with Sam. I had asked Robyn Dove, my pastor’s wife, to read my novel, “Mail Order Bride” and she asked if I would write the story of my life. Although when friends read the notes I wrote when Andrew was alive, they encouraged me to try to get them published.

It was this post of the tunnel, or rather Ginny’s comment which got me thinking again about the piles of notes I had written in 1989. I had not got back to them. When I wrote them, it was a diary to recount those turbulent days and a record for my children. Deborah and Gabrielle are now in their twenties, and have not read my notes either. The notes went with me to Singapore, moved a few times there, and came back to New Zealand in 2006. CO wanted to throw out all my correspondence.

I said, “You can throw out my family letters, but no way are you throwing out Andrew’s notes.”

I am glad I kept them. The first night was hard, I just flipped through the loose pages, I didn’t read. The second night, I started. I had to work during the day, I had to force myself to sleep. Sleep eluded me; my mind was working overtime. Transcribing from notes with scratchy handwriting is much more difficult than tapping on the keyboard and thinking at the same time. It is good having the hard copies. I can tell when my emotions were up and when they were low and how long I had been writing and when I wrote. The hand writing ranged from beautiful to “chicken scratching.”

Diary of a bereaved Mother:Chapter 3 part 1 Andrew 5th October, 1989

Little bits of kindness,

Going that extra mile,

Added together,

Takes the bitterness away.

Dr James arranged for us to meet Wendy Green, the social worker of Ward 11A. Wendy was a very lovely person. I couldn’t remember exactly what went on during the meeting. This was what she wrote in the hospital notes.

“Mum and Dad were very upset and still anxious and angry and very confused. Both worry and seem to worry about baby’s condition and how to manage in future weeks. To see again and remain closely involved.”

October 6th, 1989.

All maternity cases were free in New Zealand. Most mums stayed at most for three days. I had stayed more than a week. Dr James was under pressure from the hospital management. I had overstayed my welcome in Ward 2. The nurse manager too was pressurised. Technically, I wasn’t a patient. I used the room to sleep, I was not sick to require that hospital bed and that single room.

But they couldn’t just throw me out as they had treated me so badly when I was admitted on the Monday before Andrew was born. We were still sorting things out and it would be bad for the hospital if we were aggravated further and the sensitive nature of situation could escalate and lead to a nasty court case.

Dr James and my social worker Wendy came and told me they had found a happy solution. They had a room in the Nurses’ Home that I could have, and the hospital had a crèche that my girls could go during the day. The hospital would give me free board and food. They gave me vouchers to have my breakfast, lunch and dinner. The allowance was ample as I hardly ate a thing during those days. In fact I had enough to share my lunch with Deborah and Gabrielle.

The hospital had just imposed a new charge on the crèche meant for antenatal mums to leave their kids in when they went for their maternity check-up. For these women, the few hours of their visit didn’t matter, but for me, if I left my girls eight hours per day, the charges were phenomenal. Here was another big hurdle hanging over my head. But like the saying goes, “Beggars can’t be choosers.” I accepted this offer.

I packed my stuff and followed a porter. It was all very confusing and I was totally lost. The porter was a young Polynesian man and he was very patient with me. He kept saying, “This way Mam, watch out for cars, Mam.” We crossed roads, turned right, turned left, walked straight ahead. Finally, we reached the building.

It was just a block from the main hospital. It was like a hotel building with a tall block, and a lower entrance with the kitchen and dining cafeteria. He went to the reception to check in for me. I must have looked and behaved like a zombie. He explained where I was to get my meal vouchers and where to eat.

Mrs. Cherry Thompson at the reception desk explained where I had to drop my keys when I left and another desk where I went to get my daily meal vouchers for the Cafeteria they called Oliver’s. I soon got to know the personnel there well. Mrs. Cherry Thompson and the other receptionists were very patient, always asking how Andrew was. They were very friendly and always giving comforting words. Come to think of it, I wonder if perhaps they were told I was “The Mum”, the infamous mum with the dying baby and who was going to sue the hospital.

He took me to the room allocated to me, opened the door and asked if I needed him to take me back to the hospital. I think he was really worried about me. I told him I would be alright, I didn’t know how long I would be and I didn’t want him to wait. He said it was okay, he would wait in the common room.

The room was depressing, bare walls and thin carpet. I just dumped my things on the floor. The room was on the right side of the wing. I couldn’t remember which floor it was, but we had to go up in the elevator. It was just a single room with a single bed. There was a communal bathroom, but I didn’t remember taking my shower or brushing my teeth. I didn’t venture around the place and I didn’t go to the common room. I stuck some of our photos and a few drawings Deborah had done.

I opened my door, the porter was leaning against the wall and waiting for me.

He asked, “You ok?”

We repeated the walk back in reverse order. I had no idea where he was leading me. I just followed him. Poor man, how many to-be-bereaved mums had he taken to the Nurses Home. He was a lowly and poorly paid porter, but he did his work well.

When you walked straight out of Oliver’s, you came to the crèche and then to Ward 11A. On the left was another crèche for the staff, doctors and nurses. Why do you think I remembered this so well? I couldn’t bear to look at the children playing in the playground and their laughter and their crying.

It was as though they were mocking me, “Nani nani poo poo, look at me, listen to me, I am a healthy child. You are a hopeless mum, you are a failure.”

I bit my lips because I didn't want these children see me cry.

Tuesday, April 5, 2011

Diary of a Bereaved Mother: Chapter 2 part 2

Andrew October 4th, 1989 5.30am Wednesday Part 2

How much can one take?
A word out of place.
It blows out like a volcano,
When in fact it is a storm in a tea cup.

I am in a daze, my bucket of tears has run dry. I am like a mechanical person. I wake up at 5 am, go down to see Andrew, come up at 8am and have breakfast, go down to see Andrew, come up for lunch, go down to see Andrew, come up for dinner, go down to see Andrew until the nurses chase me up to the ward to sleep. But I don’t sleep; my brain is working overtime.

Andrew’s Chinese name is Fighter. What a silly thing to name a dying baby, did I think he is Rambo? I wish I hadn’t given him that name. He is a loser, a chicken. Yet as I looked at him, he was living up to his name. He was a fighter alright; he had defied the doctor’s prediction by five days.
Andrew came up with jaundice on Monday. His reading went from 270 to 300. I asked Dr. James if we should put him under lights. The doctors’ practice these days, they don’t put the babies under the lights at that level. I told Dr. James about the jaundice scare in Malaysia in 1977. Many babies were dying of jaundice. He then said, to allay my fears, if the reading went up to 330, he would put Andrew under the lights. I thought to myself, perhaps the doctor thought I was contradicting myself. We had agreed to give him palliative care, yet now I was asking for active intervention.

When I woke up at 5am, I was groggy and felt sick. I rang for the nurse and told her that I was feeling sick. She said she would ring for the doctor to come and see me to give me something to make me comfortable. In the meantime, she said she would stay with me. Her name was Wanda; she had been to China to Tientsin and Beijing. Her husband had an importing business. I told her, as a Sarawak-born Chinese, I had never been to China.

Wanda told me about her trips to China, the Chinese food she loved, and said I should go since I was a Chinese. I told her about the Chinese girl who was coming to stay and would be my children’s nanny and now I didn’t need her any more. We talked, we talked and talked. Then the doctor came, I looked better and I felt better.

It was “Dr. Nurse Wanda” who did the trick. She had spent time talking with me that made all the difference.

She did not say, “Sorry, I have my duties to do.”

My mood changed slightly. I wrote a letter to my sisters and brothers to pray for me. I needed strength. CO been having a lot of stress as well. The afternoon before, we had two disagreements. Somehow, after my lunch, I didn’t know what triggered it. We ended up with a fight. It wasn’t just a lovers’ spat. It was huge.

I told CO, “If you push me any further, don’t come here again, I will discharge myself, get Deborah and Gabrielle and go away. Don’t bother to find us, because you will never find us.”

I didn’t have my bag or key as CO had taken them back on Friday. Where would I go? I didn’t have any money; I didn’t have a key to the house.

That night, I kept thinking what a frightening thing I had done. It wasn’t fighting CO, but the idea of wanting to abandon Andrew. Subconsciously, I had been telling myself not to abandon him, yet this thought came to my mind in the heat of anger. I cried and cried, and the nurses gave me some sedatives to sleep because they said I really needed them.

We hadn’t reconciled when CO the previous night. He was angry; I was angry. The Bible tells us:
"Do not let the sun go down on your anger" (Ephesians 4:26).

We had just done that. If we were not in the hospital, we would have slammed the door.

I am not sure if this was why we fought. Perhaps he was tired of going back to an empty house. He wanted to take the girls home from Dawn’s house to sleep and I said it would be better they remained at Dawn’s. And he said we had imposed enough on Dawn’s hospitality. Deborah put up a fight. She didn’t want to leave Dawn’s house and their daughter Joy. To Deborah, it was a big fun sleepover with her best friend. Poor CO, he had to deal with my fight, and he had to deal with the girls’ fight in Dawn’s house. He opened the door to the house a dejected man. His wife had threatened to leave him with his girls and abandon his dying son in the hospital.

Olwyn, Bobby Tsang and his wife Ling Ling and Sim came. I told them about my fight with CO and my fear of having entertained the thought of abandoning Andrew, and that I had made the threat of leaving my husband. I wasn’t proud of my behaviour. This was an understatement; I was very ashamed of myself.

They consoled me that it was understandable given my circumstances. I was under so much stress that there was only so much one could take. They prayed for me and for Chen Onn and the girls.
The doctor came in and I told him my frightening thought of forsaking Andrew. He said that the nurses were worried thinking that I had been coping too well and was putting on a strong front. I am glad I told Nurse Wanda and the doctor the turmoil inside me and how I felt “gutted.” Wanda told me she was a Christian and I praise God for her. She spent a long time to help me.

Dr S Lim came and suggested that I should not be spending so much time in ICU. He said I should go for a walk or a drive because being confined to ICU and my room would make me depressed. He was a Chinese, but a New Zealand-born Chinese so he probably didn’t know the traditional Chinese Confinement month. I told him I didn’t want to go out, and while I didn’t practise this tradition, I had LBL and I hadn’t been well during the pregnancy; I didn’t have the mood to go any where. He didn’t say the confinement practice was hocus-pocus or old wives’ tales, but it was for the baby rather than the mum, so the baby wouldn’t catch an infection.

I wasn’t really convinced that I was cooped up in the hospital and it wasn’t good for me, but I decided to go out for a drive. I needed to post my letters, go to church and talk to Don Dickson. CO needed that support from Don because I wasn’t giving him any. And I realised just how fragile our relationship was. Though we had been married for ten years, it wasn’t as solid as I thought it was. It buckled under pressure of these last six days.

Olwyn reminded me that in Napier, a fourteen year old girl was abducted and killed. Her father was a church minister. The tragedy broke the family up. This goes to show that even mature Christians can not handle tragedies. Often these turbulent incidents can make or break marriages.

It is strange that I had forgotten this Napier case, even though I had written it down. Deep in the abyss of CO’s mind, he had hidden it somewhere. At one of our recent Bible Studies on trials and tribulations. CO suddenly remembered this case.

I had no recollection who I went with and how I went; or if I did the things I intended to do. I did go to Newmarket and was at the Chemist shop at 277, Broadway. Suddenly, I wanted to buy things for Andrew. I had not prepared anything for him. I grabbed an armful of soft toys, and as I was about to pay for them, a torrent of tears flowed. What was I doing? Andrew couldn’t play with them? Andrew was dying. The girl at the shop saw me and asked if I was okay. She probably thought I was sick. I held the toys to my chest. My poor Andrew, Mum hasn’t given you anything. Eventually I composed myself and chose a little brown puppy with floppy ears and big brown eyes. I gave it to Andrew and put it in the bassinet. Deep in my heart, I had a sense of satisfaction. Sweet Andrew, Mum did give you something after all.

When Andrew died, I gave away all of his things except one, that little brown puppy dog. I kept it with his lock of hair. Then I kept it with my Christmas decoration. Every year, when we decorated the tree, I have told the children this is Andrew’s dog. In my heart, I grieve for Andrew. This is another Christmas he won’t be joining us. I told nobody about this. I wonder what CO will think when he reads this. In December 2004, Gabrielle and I left Singapore for New Zealand. Chen Onn rang and asked if he could donate the Christmas tree to the students. They were raising funds for the tsunami in Indonesia, Thailand and Sri Lanka. I told him, make sure you keep Andrew’s dog.

I still have the puppy dog and I will keep the dog as long as I live. Then I will bequeath it to Deborah. She knew her brother better than Gabrielle and Samuel.

The morning doctor saw the puppy dog. He said I looked much happier. He suggested that instead of dwelling all the time on the sad situation, perhaps I could think of the good things. He had noticed that I was writing a lot and I had a lot of friends.

He suggested, “You have so many helpful friends, why not write about them? It will be good therapy.”
This children’s song I used to teach my Sunday School class came like honey. Count your blessings, counting your blessings one by one.

When upon life’s billows you are tempest tossed,
When you are discouraged, thinking all is lost,
Count your many blessings, name them one by one,
And it will surprise you what the Lord hath done.

I couldn’t remember all the lyrics, but the words “count your blessings, count your blessings” became real and comforting. I thought of all my loved ones, my husband, even though I had threatened to leave him the day before, my two beautiful and healthy girls, and my many friends.

CO was in a rotten mood when he came.

“I don’t want to see you if you are angry like this, you might as well not come” I told him.

He said he went home and the house was stinking. It smelt like something was rotting. Of course, nobody had cleaned the house, done the dishes or taken the rubbish out. It had been more than two weeks. The weather was warming up and flies were coming into the house. There were maggots in the kitchen bin and on the kitchen bench.

“You don’t expect me to come home to clean, do you?” I shouted. “I am in confinement, and if I was in a Chinese home in Malaysia or Singapore, I wouldn’t have to do a thing.”

We were about to continue the fight we had last night and my tears flowed. Tears are a woman’s strongest weapon. After than, we decided fighting wouldn’t make the maggots go away. We needed someone to clean the house.

We rang Brina to ask if she could help us. When CO went back that evening, the house was immaculately clean. It had never been so clean before, because Brina was a cleaner in a motel. She even did the laundry and ironing. Brina was one of the best neighbours I ever had. I am so grateful for her love to us.

My church friend Jill Arnett sent me a note and a card. She told me that she had had two miscarriages. Somehow reading that other people have had similar tragedies made ours a less bitter pill to swallow and I felt slightly better. Jill Arnett and I went back a long way. We worked in Kerridge Odeon Corporation before Deborah was born.

Lois Thornton, our Kiwi Mum, sent Daily Light’s notes. She wrote that she was just reading them and thinking of me when CO rang to tell her of our bad news. Andrew’s birth must have reminded her of Ken’s death two years ago.

It would also be hard on our Pastor Don Dickson. He had buried his mum two weeks before when she died suddenly. And now, he had to bury his congregation’s baby son. How many pastors have buried a baby in this day and age?

Andrew survived his six days. It seemed he was battling on, my little Rambo. I just have to live day to day. Was it a day of bonus or was it an extra day of pain? Dr. James said since he didn’t seem to be in a hurry to die, maybe they should get the orthopaedic surgeons to fix his dislocated hip and his club foot. It gave me a glimmer of hope that perhaps things were not so grim after all. There was a tiny flicker of light at the end of the tunnel.

There were lots of things to think about, to decide whether to take Andrew home, to meet with the social worker, to investigate to see what kind of help I needed from nurses, what home help I required, what kinds of subsidies were available to us. No matter what happened, Dr. James assured us that he wouldn’t leave us in the lurch.

Dr. James would come and see Andrew and examine him. He would arrange the meeting on either Thursday or Friday. We had the three paediatricians, Dr. James, Dr. Rowley and Dr. Armstrong to choose from to be Andrew’s doctor. It was really a hard choice between Dr. James and Dr. Rowley. Dr. Rowley had been very good to me and Gabrielle. But here in National Women’s, Dr. James has been an exceptional doctor. You couldn’t ask for a better doctor. We resolved to choose Dr. James. Dr. Rowley promised that while he wasn’t officially Andrew’s doctor, he would always be available for me to talk to him.

The management plan was now to treat Andrew as a normal baby. The only thing was we would not resuscitate him when he stopped breathing or when his heart stopped.

I had some special Chinese vegetable seedlings growing in the garden. CO had not watered them, as that was the last thing on his mind. I was worried they would die. I asked CO to go back to water them. He said by the time he got home at 10 pm, it was too late and too dark to go to the garden. We had another fight. I had a dying son, I didn’t want a garden full of dead vegetables because someone didn’t do as I requested.

God saw our fight, and answered my prayers. That night, he sent rain. I looked out of the window and saw the rain drops pelting against the window pane. I thanked God for saving my vegetables. I requested God to give CO strength to handle me and strength for me to be able to do everything.

I remembered the verse I memorised on Assurance of Answered Prayer:
Hitherto have ye asked nothing in My Name: ask, and ye shall receive, that your joy
may be full”
(John 16:24).

I claimed that and had an easier sleep.

Monday, April 4, 2011

Diary of a Bereaved Mother: Chapter 2 part one

Andrew October 4th, 1989 5.30am Wednesday

A stranger tells of her woes,
Yours are worse than hers,
You want to shut her up,
But you can’t!
You don’t shush a hurting woman!

On October 1st, I wrote to my sister Elizabeth. I was sure she would have cried with me and prayed for me.

I saw a young Hakka Chinese woman; she belonged to the same Chinese dialect group as CO. She had just delivered her second daughter and she came to my private room. She asked why I was privileged as a multiple mum to have this private room. She didn’t like to be in the open ward because she couldn’t speak English. I bit my tongue and couldn’t answer her. She cried saying that her mother-in-law did not like her because she had given birth to another bloody girl. She admired me saying that I was lucky to have a son and my mother-in-law would be so happy and treat me well. I comforted her telling her that I too had two girls, and this was my third baby. Next time she would have a son.

“No, my husband said we didn’t have money to have more children,” she moaned.

Deep in my heart, a river of gushing tears caused a tsunami. I wanted to tell her to leave, but I didn’t want to hurt her as she was an uneducated immigrant woman.

I wanted to shout, “You want to swap places? I will give anything to do it.”

Her talk verged on the ridiculous.

“My mother-in-law will force my husband to take a new wife,” She sobbed, “You are a Chinese woman yourself; you know Chinese men can have many wives.”

Blah! Blah! Blah! She went on and on. Eventually I told her that I was very tired and needed to rest and rolled over to face the windows. She took the hint and left.

My heart sang this romantic Chinese song. “I am so sorrowful, I have words but I can’t utter them.”

This song was very popular when I finished high school. We had a family crisis, when Rose heard me singing the song, she warned me never to sing it within Mum’s earshot, and it would worry her very much. Mum was hurting enough.

Right now, I am a bag of emotions. I am feeling my lowest since Andrew was born. Andrew was now six days old and was still fighting on. Since Monday, he appeared to be breathing better and had not had a near death episode. However irrational it was, I was having a glimmer of hope. Perhaps the doctors were wrong; they were wrong when they said, tonight and then three days, weren’t they? I wanted so badly for them to be wrong. I wanted my healthy little boy.

Deep down, I knew it was hope against hope. Andrew was still breathing deeply with difficulty, he still had his club foot, and he still was being tube fed. He could do nothing a healthy normal baby could do. Dr. James told me, now the deadline was ten days. I asked what if he survived ten days. How long then? He said, he would be living one day at a time, then maybe month by month and who knows?

The song, “One Day at a time, Sweet Jesus, that’s all I am asking of you;” came to my mind. When you sing this song on any other day, they were just words. But when you are actually living one day at a time, this couldn’t have been more horrifying.

I thought of two women in my family who lost their children. One was my paternal Grandma Chan. First, my 4th uncle, aged four, drowned swimming in Rejang River in Borneo. We were frequently told how my Grandpa Chan cried aloud.

He lamented, “God, why did you take this favourite son of mine? Why couldn’t you have taken one of the other boys?”

Even when he was in his seventies, he was telling us his loss of 4th Uncle and how all the women folk sighed and shook their heads. He might be a grieving dad, but he shouldn’t have cried to his god to take one of his other sons.

Grandpa gave him a grand funeral, which was unheard of at that time for a little boy. That little boy had a younger brother to call him, “Ah Ko” which meant big brother, so it was fitting that he had a funeral and be remembered. But a grand funeral? The people shook their heads. Grief had softened his head!

Every year, at Ching Ming Festival, Grandpa led all of us to pay respect to his poor son. Forty years later, Grandpa, aged almost eighty, wanted to move 4th Uncle’s remains to a new cemetery to a new grave next to his, Mum and Dad and Grandpa went to dig some dirt to put in a little box. It was a symbolic gesture to remove his remains. Mum said that Grandpa dug and dug, and there was nothing. It was very hot under the tropical sun, Mum told him to stop, he would find nothing. He refused; eventually he found a sole of a tiny shoe. Mum said that Grand Pa had loved his son very much. He had buried his little son in a pair of leather shoes when most people walked barefoot at that time.

There was no talk about how Grandma grieved. Was she a stoic woman? Grandma came from a rich family. She brought a slave girl to do all her housework, but in the Chan’s family, everyone had to work. She suffered in China. When she and Grand Pa came to Borneo, she endured hardship as a pioneering woman. After 4th Uncle died, she wanted to return to China. Maybe that was her way of escape. As a strong headed woman, she was determined to go even when Grandpa said, “If you go, I will take a second wife.”

She must have been heart-broken when she left. Shortly after she returned to China, her third son, at seventeen, suddenly died. He came home from a basketball game and felt sick and “dropped dead.” The local people said he suffered from what many people returning from the tropics to a temperate country suffered, the suddenly transition from the extreme heat to the cold killed him. Some people even pointed the finger that Grand Ma had killed her son indirectly because she insisted on returning to China.

Poor Grandma, her husband had taken a new wife, her sons dead. After that, she lost her will to live and died without any apparent sickness. The Chinese call it Sum Tung or heart ache.

I never saw my grandma. But now, I was thinking, Grandma, I am following in your footsteps. I am burying my son.

I was in primary school, my aunt, Mum’s brother’s wife, had gone to deliver her baby in the hospital. The baby died. We were not told if it was a boy or a girl. It has become an unmentionable, forever to be forgotten by everyone except by his mother.

Mother arranged for a trishaw man to take the baby away and paid him twenty dollars. The Chinese are shackled by this sad belief. They believe that if a baby dies, his spirit will return to his mother and dwell in the body of her next baby. The next baby will die and the cycle goes on. If you give him a funeral, it makes it attractive to come back. Hence, if you pretend that he was never born and treated as rubbish, he won’t come back and you will bear healthy babies.

Saturday, April 2, 2011

Diary of a bereaved Mother: Chapter 1, part three

2nd October 1989, Monday 4.30am, part three.

What can you do?
You cry!
He has a dying episode.
He gives you a glimpse of what death is like.
It is not his time.
You wait and wait and wait.
Sleep eludes you.
You write.
That all you can do.

Don Dickson suggested we give Baby our Baptist Church infant dedication instead of a baptism.

I wanted Deborah to be present. Olwyn went to pick her up. I needed to change my stained gown to look good for Deborah. I asked for a clean gown and some pads. The nurse said they didn’t have normal gowns at Ward 11A but would give me something else. There were only the green scrub gowns. An older nurse said those green gowns were only for the staff and said it rather rudely. I was about to burst into anger and shout that my baby was dying and I don’t care if these gowns were only for the staff. I didn’t; I cried instead.

I was glad I did not shout, because if I had, I would feel terrible. I didn’t know I would be a permanent fixture of Ward 11A for a long time. I wore the green surgical gown and my thick red maternity top. That was the closest I ever came to being a surgeon.
I sat beside the heat table waiting for Deborah to come. How would a mother tell her four-and-a-half year old daughter that her baby brother was going to die?

Previously, Deborah had a pet gold fish. She had called it Andrew. Fish Andrew died one day. We flushed him down the toilet. She was upset for a long time. I should have buried it in the garden. In fact, Deborah had not told us this, she told our neighbour Brina. She wanted to name Baby, Andrew.

Though Andrew was a good name, I thought of her dead fish. I grew up in superstitious Borneo. I didn’t want Baby to die like her fish. I told her perhaps we should choose another name. But Deborah was adamant she wanted Baby to be called Andrew. I agreed reluctantly. I didn’t tell her about my reservations.

CO had gone with the doctors. I was alone; actually, the nursery was full of nurses and babies. I had just mentally blocked them out. I sat gently stroking Baby’s hands. I couldn’t utter Andrew. I thought of Deborah’s dead fish. Was it a coincidence? Was he destined to die because of his name? Would he be a healthy if I had called him Moses or Tom? I couldn’t tell anyone, especially CO. He would scold me that I was stupid to believe in such old wives’ tales.

On the previous evening, on Thursday, Brina told me in great detail about the baby she lost. She had briefly mentioned her miscarriage, but on this occasion, she went into great detail. Brina said she accepted that miscarrying at seven months was the result of her working too hard. Brina accepted that maybe the baby was not normal. So it was better for him to die. At other times, I might have got very upset, talking about such an inauspicious thing so late in my pregnancy. But God in his way provided my first discussion about accepting death.

Deborah came, we hugged. I tried to hold back my tears as I tried to tell her the bad news.

Instead, she told me, “Yes, Mummy I know already, Baby is going to Jesus. Olwyn told me when we were coming here.”

Deborah didn’t cry. I cried even more. On the way to hospital, Olwyn had told her that Baby was very sick and may go to Jesus. Deborah replied that to go to Jesus, you have to die first. Later Olwyn told me that during their discussion, Deborah said that when she dies as an old woman and goes to Heaven, Andrew would be there and he would be an old man.

There was a breastfeeding room at the back of the ward. There were nice sofa chairs, rocking chairs and so on. We could perform the ceremony there. A nurse took some photos. We looked terrible, but I am glad we have them now. We thought it would be good for Deborah to be here. She had been looking forward to her new baby.

I held Andrew at the beginning of the dedication service, and Deborah stood by my side. We told Don that we had decided to call Baby Andrew. Don carried Andrew in his arms and prayed for him. Andrew opened his eyes, without anyone prodding him, for the first time. We all saw that. He seemed to be responding to someone. The nurse offered to use the ward’s Polaroid camera and took our photos, and she was so good.

The nurse wrote on Andrew’s card, baptised. I didn’t bother to get it changed. Later, Christian leaders came and offered to pray for him. When Roman Catholic nuns came, initially I said, “Sorry, we are Baptist.” Later, I didn’t care, let them pray, no amount of praying would stop Andrew from dying.

CO went to take Deborah to our friends’ house for the night. They were our other very good friends, Ian and Dawn DeStiger. As I had not read my notes since I wrote them 21 years ago, I had always wondered where the girls slept that night. Ian and Dawn are still our very good friends.

Olwyn and Don stayed with me until CO came back. I held Andrew. Poor Andrew, he was going to die. He couldn’t even cry; and occasionally he whimpered like a tiny kitten. I suggested that Don go back as it was very late, and Olwyn could stay with me. Don was going to, then he changed his mind. He wanted to wait for CO because he wanted to talk to him.

Finally CO came back, and Don and he had a talk outside. Later, CO said that Don had told him about making the funeral arrangements. CO needed support as he was the head of the family, and he had to support me. As I had carried Andrew for nine months, I was naturally more attached to Andrew than he was.

The nurses had removed Andrew’s drip for the ceremony. They asked if I wanted to breastfeed him.

I said, “No, I will feed him with a bottle.”

I asked for soya milk even though he was going to die; I didn’t want to give him something he might be allergic to. They had to get special permission from the doctor. They went to get it specially made for him. They could only find Isomil. Gabrielle had Infasoy. It was just a brand difference, so I didn’t mind.

In fact, the main reason I didn’t want to breastfeed him was that I was frightened of getting attached to him. And when he died, it would be harder for me to let go. I didn’t tell the nurses this. It was just as well: when the milk came in the bottle, Andrew couldn’t swallow. He could suck weakly, that was all. They had to tube-feed him. It hurt me in the stomach to see how it was done.

The nurse took a sterile tube, measured it from his ears to his stomach. Then they put the tiny tube down his nose. By this time, I wanted to vomit. Then from about one foot length hanging out of his nostril, they attached a syringe filled with milk. The nurse gave the syringe to me to hold above. The milk went down by gravity. The charge nurse prepared the milk for us.

By then, I had got to know the nurses. They were all very friendly and warm. My lips became very dry and raw and they got me a small jar of petroleum jelly to smear on them. It soothed my physical pain, but not the pain in my heart.

The nurse taking care of Andrew was called Anne; the nurse who admitted me to Ward 2 was also Anne. They constantly gave me tissues to wipe away my tears. We formed an affinity. I don’t think it was because of the special nature of Andrew’s condition -- they were all very very good to me.

I cried; I would rather be ordinary and have a living baby. A Chinese nurse, Dana, was there. I think she was from Hong Kong. She asked what I had named him, and I told her his Chinese name, but I didn’t know how to write it as I wasn’t good in Chinese. She helped me write his Chinese name.

At 10.30pm, CO said he was very tired and had to sleep. I suggested that he went up to Ward 2 to my room to sleep. I resolved to be with Andrew when he died. The Chinese have this saying “Shoon Chung” which bidding farewell for the last time.

I was thinking to myself, “If I can’t be your mum for a long time, let me at least be there when you go.”

Olwyn stayed a little while longer. We fed Andrew again. He had to be fed very regularly at short intervals because we were feeding him a very small quantity, smaller than a test- tube. His stomach could not handle too much or he would vomit. Olwyn went home. I was sitting on a rocking chair by the heat table. CO went somewhere in search of pillows to make me comfortable.

It wasn’t the comfy pillows on the rocking chair that gave me strength. It was God. Prior to the day, I was very sick and coughing and not sleeping. Miraculously, that night, my cold, my cough, was gone. It was as if I had become super strong for my dying baby.

There were six babies in that nursery 10. A mother was there taking care of her baby. In fact, most of the times, the mothers were helplessly looking at their babies.

I didn’t care about the other babies in the incubators or on the heat tables. I only cared about Andrew. Sometimes I cried, sometimes I just looked at him. The charge nurse asked if I wanted to go to the end room where we had the dedication so I could have some privacy and it would be more comfortable. Since were now letting nature take its course with Andrew, he was not a medical priority. He was no longer attached to the wires and tubes, he was mobile. It was well past 11pm. I said yes and they moved us. Andrew didn’t require a bassinet because I wanted to hold him. I walked with him once again along the corridor with the charge nurse by my side.

Wai Seto, a Malaysian friend from Church who was training to be a paediatrician came to talk with me. He knew my students when I was a relief teacher after I finished High School. We had a good talk. He and his wife Elaine knew Ipswich where Mother died. My sadness went away momentarily. Wai perused Andrew’s notes and photos, and examined Andrew.

I asked, “Why is he floppy like a rag doll?”

Wai replied, “His cartilage is not well formed and his bones are sort of soft.”
I asked again, “You mean he will not be able to stand?”

Wai told me, “You needn’t worry about him not being able to stand; he will be gone by then.”

He asked, as a friend, how I was coping. I said I was coping.

I was alone with Andrew in the breastfeeding room. He slept in my arms and I looked at him. How could it be? He looked so perfect and normal. At 12.30pm, he whimpered and cried in his little voice. He looked as though he was in agony. I thought the time had come. I prayed to God to take him to Heaven to be with him; I told Andrew to go, to let go and not to fight. For a long time, he was struggling and gasping for air. I rang for the nurse. She saw him and knew that he was dying; she rang the ward to get CO to come. CO came and we hugged each other. Inexplicably, he stopped whimpering; he must have been so tired that he had no energy to struggle anymore and just flopped.

Having seen his agony of struggling against a near-death episode, we talked.
Earlier in the evening, Andrew James had said, “We won’t prolong his life artificially, but make him as comfortable as possible.”

What was that, what did it mean? Feed him when he needed, but no treatment?
A Dr Knight came; the nurse must have told him that Andrew had a near-death episode. I asked him what to do when Baby was in distress.

Dr. Knight said, “Sometimes we give babies a sedative to help their distress. They go to sleep and do not wake up.”

I asked CO: when we fed him, were we prolonging his life? Therefore we were prolonging his suffering. If that was the case, maybe we should not feed him; then he would die naturally.

CO said, “We must feed him, otherwise by starving him, we are playing God. It is euthanasia or mercy killing. We must not do that.”

So I felt comfortable by this explanation that by feeding him, we were not prolonging his life but keeping him comfortable.

Then we realised that Andrew had done his poo. He didn’t like it. The nurse cleaned him up and changed his nappies. He felt better. I remember Mum telling us that when Grandpa died, he did a big bowel movement before hand.

Mum said, “He was very clean when he met his maker in Heaven. This is very important to the Chinese.”

In 2006, this happened to Dad too, we had dressed him very smartly his business suit. Just before he died, he did a big bowel movement. I kept thinking.

Mum had said, “It was important to be clean.”

CO and I sat facing each other and we talked. CO was crying. After Andrew settled for a long while, CO went to Ward 2 to sleep. We agreed that should Andrew cry again, we should check his bottom or feed him or call the nurse, instead of panicking.

CO said, “God is so gracious. He gave us two healthy children first. We definitely would not have coped if Andrew had been our first child.”

We were not going to have any more children. The doctors told us to wait for six months and have genetic counselling before we took drastic action.

I stayed in the room and held him while he slept. At 4.30am, I went to Room 10 for Andrew’s feed. I was very tired, and Nurse Gill could see it. She said she would put Andrew in a cot next to me in the breastfeeding room. I couldn’t sleep. The whole episode of the day kept replaying in my head.

God, please let your will be done, please do it quickly.

Even Jesus on the cross prayed, “If this cup can be taken away.”

Jesus experienced suffering. Why was I chosen to undergo this painful experience? I have not done bad things.

A young mother came to pump her milk for her baby. She knew I was a newbie and she shared with me her early experience. She said she bawled her eyes out when she got her news. Then she told me the etiquette of being a mum in the ICU. We can say Hi to the other mums, and if they smile back, you can talk to them. But if a mum doesn’t respond, respect her privacy. Her baby is likely to be very sick. Never look at the baby unless she invites you. Preemies can look very grotesque or very small. The mums do not like that. We formed a sisterhood, two mums with very sick babies. The only difference was her baby was getting better and better, and she would eventually take her home.

I went back to Nursery 10, there was a Maori mum whom I had befriended when I was admitted on Monday at the antenatal ward. I had forgotten her name; she had diabetes, and her baby came very early. She was surprised to see me as my baby wasn’t due for another three weeks. She hugged me as she was the oldie and me the newbie. We both cried, and I briefly looked at her baby; he was like a rat covered with black hair. I was grateful that at least Andrew was a proper baby.

This Maori mum was there for a long time, and then I didn’t see her. I thought she had been released from hospital and went home with her baby boy. But before Andrew died, she came back. She hugged me and told me her baby died, and they went back up north to have a proper Maori burial, a tangi. She came back to Ward 11A to return the blanket she had borrowed when she took the baby home. It was heart-breaking for her to come back to the place her baby died; and likewise for me, because soon, I would be like her.

I asked questions and talked to myself. You read in books, you watch on television or movies. You don’t think such tragic things happen. Now, it was happening to me. I cried, but I sure would like to know why is there such a cruel thing as Campomelic Syndrome. Why are the babies in this ICU dying?

Sometimes, I used to imagine dramatic things to add a bit of spice to life. But within 20 months, I had two dramatic events happen to me. Mother’s accident and death and Gabrielle’s early arrival were all dramatic. I didn’t get the chance to grieve for Mother. Now, less than two years on, I have to grieve for my son Andrew. How was I going to take it? In movies, I see mothers stoically at their children’s funeral, throwing soil into the grave. Would I do it, will I visit his grave, and will I never go to see his grave? One hundred and one questions with no satisfactory answers.

CO came down around 6am. He couldn’t sleep any more. We agreed he would take care of Andrew. He said after breakfast, I should take some sedative and go to sleep because I really needed it. I must have looked like a zombie.

I came up to Ward 2. An enrolled nurse saw me. She was an elderly Maori woman. I don’t know why, I burst into tears. She hugged me tightly with her huge body, engulfing me. It was such a good hug. She said she would get a nurse to check me out. They had not known that I was up the whole night. They looked in my room and saw CO sleeping there. They thought it was me and assumed I slept very well.

The nurse checked my blood pressure as I was getting light-headed, and said I should get some sleep. They would tell the doctor to get me some sedatives. They told me I must keep healthy and strong for my baby. If I fell sick, the ICU would not let me go there.
I had a long hot shower and shampooed my hair. The hot water refreshed me. CO had brought a hair drier to dry my hair straight away.

It is the Chinese belief that if a woman has delivered a baby, she isn’t allowed to shower or shampoo her hair. Otherwise in the future, she would get arthritis and rheumatism. As I had all three of my babies born in New Zealand, I did not adhere to this practice, but I dried my hair very thoroughly and quickly.

The shower refreshed me. Breakfast was served at 8am. I told the nurses to keep my breakfast because I had to see my baby. CO wasn’t happy to see me because I had not rested. But when he saw how well I looked, and I told him, I wanted to be with my baby, and not to force me to do anything else, he conceded. I was just concentrating on Andrew and being there when he died.

CO mentioned about the sad puppy picture on the wall. I didn’t bother to look or reply to him. Later he talked about the other babies in the room.

I said quite sharply, “Honey, don’t talk about anything else. Now, I don’t care about anything else but my baby.”

He said, “Sorry.”

Later he apologised and said his intention was to distract my mind from our sad situation.

Then came the inevitable question.

CO asked, “Shall we talk about the funeral?”

I was in denial and I screamed, “Andrew is alive, why are you talking about his funeral. I don’t want to talk about it.”

I had all the pent up emotion, and I released my anger at CO. He said Don Dickson had a good talk with him and there were a lot of things to be done, and it was good to be prepared. I had almost forgotten that Andrew was supposed to have died in the night, and I was just buying time. He wasn’t going to be better.

Some time later, I asked CO to bring the girls. CO said Dawn had arranged for Deborah to go to Mt Albert Baptist Church for some drama. Then I asked for Gabrielle. She was 17 months at that time.

CO went to pick Gabrielle up from Dawn’s house. After he left, the nurse must have asked if I had had my breakfast and sent me up to Ward 2.

“Remember, you need your energy”. The nurses kept reminding me.

I couldn’t eat; I had no appetite, but I knew I must eat. I was not Wonder Woman. I had not eaten anything the previous day.

I told the nurse I would come back.

I came down to ICU as quickly as I could. There was a new nurse, whose name I didn’t catch. She got Andrew’s bath ready and asked if I wanted to bath him. I said, I would not bath him but I would wash his face. I think I was afraid to see his misshapen body. Actually, he wasn’t so bad, his handicap was hardly obvious to a lay person. As I held the face cloth to wash his face, a torrent of tears came pouring down my face. I started sobbing. Here was I, such a hopeless mum who couldn’t even give her baby a bath.

Someone touched my back. I thought it was the nurse, but through my blurry eyes, I could see that she wasn’t in uniform. She hugged me, it was Olwyn. She had come at the right time when I so badly needed someone to comfort me. I had asked CO to ring her to come with writing material, tissues, Bible, and a book on the topic “Why” and breakfast for CO.

With Olwyn, suddenly I could talk about death and funerals. I surprised myself as just a couple of hours earlier; I had refused to talk about it with CO. We sat talking, with me holding Andrew.

I told Olwyn the Chinese funeral and burial customs. Dad and Grandpa had told me that the Chinese don’t cremate their dead. Grandpa had specifically said he didn’t want to be burnt. He said it was very “meat sour” to be burnt after you are dead. I remember going to the exhumation of my maternal great-granddad’s bones. Many of the older people even wanted to take the bones back to China.

Mum was buried in Australia and I often wondered if Dad wanted to exhume her bones and rebury them in Sarawak. He had talked about it saying if the Australian authorities allowed it, he would like it very much.

In fact after Dad’s funeral, this issue was discussed. Dad died in Sarawak. Mum and Dad had three graves, one in Sibu, their birth-place, one in Australia, where they lived together after they retired and where Mum was buried, and one in Kuching, Dad’s final resting place.

Now, I have this dilemma, though we have both lived in New Zealand for more than a dozen years, we have not made this our permanent home. What were we going to do? Would we bury Andrew here and then leave him all alone here?

What if we went to live in Australia where many of my siblings are? Poor Andrew, he would have nobody to visit his grave. Maybe Deborah and Gabrielle would visit him. Maybe I will come over from Australia and see him every now and then.

Should I cremate him, keep his ashes and then bury him in Australia? Olwyn said it would be terrible to have the ashes at home for Deborah to imagine Andrew in the fire. I remembered Grandpa talking about “meat sour”.

So I thought I will bury him here and while I am here in New Zealand, I will go to visit him. Olwyn assured me whenever I wanted to visit his grave, she would take me. I talked about when, how often and so on.

The Chinese have a particular day, Chin Ming when they go to the grave. The Roman Catholics, whose customs was my background visit, on All Souls Day. Now I am a Baptist, when do I visit? Olwyn said, here, there is no particular day, you go when you want. My neighbour Brina visited the cemetery very often. I understand why, it was not to visit her late father-in-law or aunty, but to visit her late baby son. Her husband Paul told CO that their baby was buried next to his dad.

We must have talked enough on this morbid topic. So we talked and talked about other things. We diverted our discussion to other nationalities’ way of cooking. Olwyn is a New Zealand, and I am an ethnic Chinese, born in Sarawak but living in New Zealand.
The Chinese have a practice commonly known as “confinement”. When a woman has delivered her baby, she has someone come to take care of her and the baby. It was a way of pampering so she gets plenty of rest. When I had Deborah and Gabrielle, I didn’t have the luxury to being pampered because they were born in New Zealand; besides, CO didn’t believe in this.

This time round, with two babies under two, we had arranged for a Chinese student, Chen Jie Wen’s friend Chen Mu to be our nanny for two to three weeks. We would pay her $150 a week, and she would live in and eat with us while she helping out with housework and minding Deborah and Gabrielle. CO said he didn’t want her to cook because she wouldn’t know how, and he himself would do the cooking. Now that Andrew was dying, our present circumstance meant we didn’t need Chen Mu.

The nurse reminded me that I hadn’t had breakfast, and the wards don’t normally hold the breakfast trays for patients. They held mine for me because of my special circumstances.
I was back in Ward 2 for my breakfast.

The cleaner came in to take the water jug. She was a Polynesian woman, and she knew something just wasn’t right as I didn’t have the baby with me in the room. She told me she would come back in 45 minutes to take the tray. I knew she gave me special treatment because she had come in a couple of times and asked if I had finished. I was embarrassed for holding up her work and said sorry.

She kindly said, “No love, you eat slowly, then see Baby.”

I gobbled down my breakfast without looking at what I was eating.

As soon as I finished eating, I rushed down to Ward 11A. I couldn’t bear to be away from Andrew for one minute. CO came with Gabrielle and a friend. I have no recollection who that friend was. If I had not written this diary, I wouldn’t even remember that she came.

Gabrielle just brightened the place, She kept saying, “Babe, Babe.”

She was barely 17 months, and had no idea what was happening. I stopped crying when I saw my other baby. I hugged her tight as though I was worried she would die too.
The doctors decided that since Andrew was off the ICU case, he could be up in Ward 2 with us so we would have our privacy. A baby dying is very traumatic and it would affect the other mums in the ICU. We brought Andrew up to my private room.

We had lots of visitors.

Dr Bobby Tsang said something very profound which cut into my heart: “You and CO are the best parents for Andrew.”

I asked him to elaborate. He said that God chose us to be Andrew’s parents because he knew that we would love him. That same weekend Andrew was born, Bobby told me that a pair of twins was born. One of them had a fatal condition, but the mother couldn’t abort her because the abortion would affect the good twin. After the babies were born, Mum left the hospital with the good twin. The sick baby was left to die.

Actually it was this dying twin who reminded me and gave me the assurance that I was doing the right thing and telling me that I did not abandon Andrew. Later in the week, on the fourth day, when Andrew went back to ICU, that little twin was in the next nursery or cubicle to Andrew. The nurses would come and say Hi to their most precious babies. There was Andrew with his mum by his side everyday, and at the next nursery was this baby who was abandoned. One day, I asked the nurse and she told me that the baby was Lo, the baby that Bobby told me about.

Paul Khor came to visit. Paul took our wedding photos. I asked if he would come and take our new family portrait. He came, and we had wonderful photos. We removed Andrew’s feeding tube out from his nose. The photos were so good that I didn’t look haggard despite after two nights of no sleep. I sent two photos to the Campomelic Families group. We were the only Asian CS family.

After Paul had gone, we waited for the nurses to come and feed Andrew. But no one came. Eventually, I rang for the nurses. They said they would page for the ICU nurses to come, but they were really busy down at Ward 11A. It was a long time, and I thought maybe since Andrew was dying, feeding him was not a priority. I didn’t complain. Neither did Andrew. Eventually, a Malaysian nurse who started to come to the Baptist Tabernacle came on duty. She was Sim.

Sim explained that the normal ward nurses are not allowed to insert the nasal tube into babies to tube feed babies, and the ICU nurses were really busy. Sim had worked in ICU before, so she was allowed to insert the tube to feed Andrew. She rushed down to ICU to get the tubes to feed Andrew. Sim became a very good friend, often coming to see us when she got off duty. She was an angel, and cooked some confinement food for me.

Dr Andrew James said Andrew would probably die by the third day. We trust God’s will be done to him. I had a good sleep on Saturday. I prayed before I slept. I asked to God to give us a sign. If he was going to take Andrew, would He please take him quickly with just one death episode.

I continued to ask God to give us the sign when he was going to take him. God was good to me; on Friday and Saturday my cough and cold was gone. On Sunday, my church prayed for us.

On Sunday after noon, Gwen Bettridge came with a pot of brownish orange chrysanthemums. She said she didn’t want to buy me flowers because they would fade. She would rather give me a live pot plant. Gwen said I could grow it in the garden when the flowers were gone. I told her I like chrysanthemums because I had seen the beautiful ones in the Winter Garden at the Domain. We sat chatting; Gwen was a nurse.

The ward clerk came with the Plunket Baby Book and gave it to me saying, “This is your Plunket baby book.”

I told her, my baby doesn’t need a Plunket baby book.

In her uppity manner, she said, “All New Zealand babies need a Plunket baby book.”

She must have thought I was an uneducated immigrant woman.

I told her, “My baby is dying, he doesn’t need a baby book,” and I burst into tears.

I wanted to fling the book at her. But I didn’t. I had never thrown anything at anybody, and I wasn’t about to do it now. She quickly retreated out of my room. Gwen went after her to explain.

I held the Plunket book, a book in which all mothers recorded the development of their babies. I had one each for Deborah and Gabrielle. What was I going to do with this book? How much could I enter before Andrew would die and I would be left with an almost empty book. The clerk had stuck Andrew’s sticker on it so there was not much point in returning it. I clutched the book to my chest and cried.

After about 15 minutes, the poor ward clerk came to apologise. She was only a reliever in the weekend, and she said that nobody had told her about Andrew. She only did what she normally did in the case of a new admission.

I told her, “It wasn’t your fault, someone should have told you.”

It was only that she came at the wrong time when Andrew was going to die any minute.
Later I told Olwyn, and she said that while Andrew was still alive, I could enter notes in it. I did not record anything in it.

On Sunday night, I started coughing again; my whole body was aching. My milk was coming, and my breasts were engorging. They were crying for Andrew to suck on them and clear the blockage. I was feverish. I took this as a reminder that I must take care of myself. I had not taken any sedative because Olwyn had said, it was important I wasn’t doped off kill of all my sensations. God’s been giving me strength. Andrew was supposed to have died by now, and he was still hanging on. The waiting on tenterhook was sapping my energy.

Monday, October 2nd. It was the third day; these days had been the longest days of my life. It is 9.40am. I have just finished my breakfast. I had a fitful night’s sleep. I kept dreaming about Mother’s funeral and Andrew’s.

Dr. A Lim came in and checked me over. Then he dropped the bombshell. He said since Andrew is a boarder, we should really go home. I was upset. How could I take Andrew home? I couldn’t even feed him. I have not bathed him because I couldn’t bear to see his body. He mentioned something about hospital policy and the government didn’t have money for people who didn’t need the medical services to stay in the hospital. It was as if he had delivered a swift dark whirlwind, bringing debris to my life. Didn’t I pay taxes? Didn’t CO pay taxes?

Olwyn came. I was crying loudly when Dr. Andrew James came. I told him that Dr. A Lim has discharged me and Andrew, and I was not ready. He said Dr. A Lim was wrong to discharge me. As long as a baby is tube fed, and needed oxygen, and his mum is not competent to feed him that way, and if he needs oxygen, he is a patient and not a boarder.

So Andrew was whisked off back to intensive care as the ward nurses were not qualified to take care of a baby on nasal tube and oxygen. This time he was transferred to the last but one nursery. This nursery is when the babies are almost recovering and will proceed to the last-stage room. In all cases, except for Andrew, the babies were getting ready to go home. I knew in my heart, when Andrew went home, it would be go home to his Father in Heaven.