Diary of a bereaved Mother: Chapter 1, part two

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

Like a sheep led to slaughter.
You allow yourself to be led.
You see him.
Stark naked.
Tubes and wires stuck all over him.
Your heart jumps into your mouth.
You are not even allowed to hold him.
He is dying.
You die with him.

At about 4pm, a doctor came and introduced himself as Dr. Andrew James. He said he was the specialist in charge of our baby. He asked if I knew that Baby had anything or if I was prepared before he was born for the possibility that he would have some problems. I told him about the four scans I had had done at Greenlane Hospital showing his bent femur but the doctors and Dr. S Lim didn’t seem to worry about them.

Dr. Andrew James explained that Baby’s foot is called a “club foot” and his femurs were a little bent. His body looked longer than proportional to his legs. For a normal baby, it was 1.7 to 1; our baby was 2.2 to 1. His face looked a little funny to a European. He had a low nose bridge, his eyes were a little far apart, and his ears were low set.

I said, well, Chinese babies are like that. The club foot can be fixed, can’t it? Andrew James said that Baby’s club foot was more serious than a normal club foot. Most babies were usually treated with a cast. For Baby, perhaps when he was one or two, they could surgically operate and fix it that way. Then he would be able to walk normally, wouldn’t he? I told him, Baby’s father has a long body. Maybe Baby took after his dad, and that must be why his body was longer than proportionately to his legs.

He suggested I come down to see Baby. I don’t know if Dr James was wondering why I hadn’t gone down to see Baby, and then we realised there was a miscommunication: that I was given the understanding that Ward 11A would inform me when I could go and see him. From hindsight, I wonder if the doctors and nurses there were wondering if I had abandoned Baby, as this scenario does happen with very sick babies.

My mind went haywire. What was Dr. Andrew James telling me? I was about to go down, but found I didn’t have the nerve to go by myself. I didn’t know what to expect. I lay on the bed and waited for CO to come. I waited, I waited, I waited and he still didn’t come.

At 4.45pm, I rang CO's office. The receptionist said that CO had left at 3.30pm. I rang home; the phone was engaged. I waited, I waited, I rang, but the phone was still engaged. I rang our friend Dawn who was babysitting the girls. No, he wasn’t there. I rang home again; this time he was. He said he was washing up. I told him, come right now, forget the chicken soup, forget the girls, and forget the washing up.
I was quite upset that he was home. He hardly ever did any washing up -- Why was he doing the washing up, and he didn’t even brew the chicken soup? I put the phone down, and the floodgate of tears burst wide open. The other mothers must have seen me but they pretended not to notice.

CO came without the girls. He saw me crying. I cried on our way down to 11A. He knew it was serious, otherwise I wouldn’t be crying like that. When we got there, I was all in a daze. Baby was in between two other babies on a heat table. It wasn’t an incubator. He was in the highest priority nursery. A doctor was leaning over him and checking his heart. It was a worst case-scenario. He had tubes and wires stuck all over him, and he was breathing very quickly. The medical term is laboured; you could see his rib cage going up and down. I wasn’t allowed to touch him. The nurse said I would be in the way of the wires and tubes.

My heart was in my mouth. I had that choky feeling in the throat; I couldn’t say a word. On Monday, in this very hospital, a specialist, Dr Larry Tan, had told me that Baby was normal. And now he was lying there naked with all these wires. How could it be? How could all the doctors, especially a specialist, make such a blunder?

Dr. Andrew James came to talk to us. He said that Baby had a syndrome, what he couldn’t be sure of yet. Then I remembered those ratios he was telling me about in the afternoon.

I asked if Baby was a midget.

He said, “Something like that.”

Then he mentioned about his brains. I asked if he was stupid or an idiot. Then he lifted his limbs for us to see and said, “Baby is floppy.”

Baby’s hands and legs were like the tentacles of a jellyfish.

CO asked something about movement and his brain. Dr. Andrew James gave us some articles to read.

I couldn’t bear it any more. My nose was blocked up. I just cried, snot was flowing and I had no tissue to wipe them. My poor baby is a very, very sick baby. Someone touched and rubbed my hands. It was Dr. Andrew James. I asked him quietly what the chances were that he was wrong.

He said something like, “It is unlikely I am wrong. We have requested another doctor, -- Dr. Salim Aftimos from Lebanon, who worked in Princess Mary Hospital and has had handled a case like this -- to come and confirm this.”

No! No! No! Please tell me you are wrong.

Dr. Salim Aftimos came quickly. He said he came as soon as he could from the city hospital. He examined Baby. After much prodding and probing, Andrew could move his hands and his other leg. One of the hips was dislocated, so he couldn’t move that one. His chest was bell-shaped and very small. His genitalia weren’t big like a normal male baby’s. The probing made Andrew opened his eyes. CO says his eyes were alert. We were hoping his brain was not so damaged. Then he quickly shut his eyes again. Dr. Salim Aftimos went to the office, where there was a whiteboard. We went there with Dr. James and Dr. Rowley. He said Baby was going to die that evening. Baby had Campomelic Syndrome, which is lethal and most babies die.

What did I hear? Baby is very sick and he may not even make it through the night? If he didn’t, at most it would be three days. I couldn’t believe it. How come our baby got something which is so rare that it occurs something like one in five million?
I couldn’t talk; I had a lump in my throat. I just cried. I sat by his heat table shaking my head, bawling my eyes out. I couldn’t hold him as he was attached to all those tubes and wires. My poor baby, he was right in front of me, but he couldn’t even get my touch. I told CO to call Olwyn Dickson, our pastor’s wife. I can’t remember if I asked her to come with Deborah.

CO went and took the article with him. He came back crying. He had read the article and understood the gravity of the syndrome. Dr. Andrew James talked to us. We accepted that he was a very sick baby.

He explained the article which said that there was a 17 year old CS survivor. Most babies with CS were mentally and physically handicapped. One had an IQ of 45. I cried again, I didn’t want my baby to live if he was mentally handicapped. His daddy had a PhD, and his two older sisters were normal and very intelligent. I accepted that he was going to die, Please God, I thought, let him die quickly.

Andrew James asked if CO and I were related. We were not, we couldn’t be. CO was from West Malaysia and me, from Sarawak, East Malaysia. Everything was a blur. I don’t remember when we both made the decision of to let nature take its course. I watched the nurses remove all the tubes and wires. As the nurse removed each item, a needle stabbed my heart. It was as though every tube taken away from him took him to one step nearer to his death. My heart was crying out, “Stop!” but my head knew this was the right thing to do.

The solution was to give him palliative care, which was to make him as comfortable as possible. Was that decision akin to pulling the plug? I don’t remember, as he wasn’t put on a life support machine. If it was, I did not know; I always comforted myself that I didn’t have to make the decision to turn the machine off. He did not depend on a machine to help breathe, when he died, it would be a natural death.

I had no idea what happened next. We were back in the ward. I don’t think I ate anything. The nurse manager came and got the nurses to push me, sitting on the bed, to a single room. She said it was easier this way, to put everything on the bed and move me. If you can see the funny side of it, I was like Cleopatra, pushed along by her subjects. The other mums in the room must have thought I was very sick to be pushed on the bed. I knew Andrew James had arranged this. I had watched movies and television shows where women who had lost their babies had to go through hell, watching other mothers with their babies. For this, I am eternally grateful to Andrew James.

Olwyn came; and our very good friends and Bible Study group leaders Janice and Gary Corbett came. Janice and Gary gave me hugs. These hugs were so good and comforting.
We must have gone down to 11A again, because they had Baby’s X-rays, and they confirmed that indeed Baby had Campomelic Syndrome, and the doctors were not wrong.

Dr. James asked if we would give his body for an autopsy. There hadn’t been a case, that he was aware of, in Auckland. This would be a very special opportunity for doctors to learn about CS. He understood if we refused; not many people gave up their loved one’s body for an autopsy. I said yes if Andrew was useless to me, at least he would be useful to science. I didn’t even feel irritated that he had the audacity to ask when Baby was still alive. Dr. James thanked me but told me I didn’t have to decide there and then.

Dr. Andrew James told us in Olwyn’s presence that we should remember that the important thing was that we were the parents and the doctors were there to help us. We make the decisions. But they would not treat Baby as he was so seriously sick. Normally, when the alarm sounds a code red, everyone would rush in to help. For our baby, we would be to let nature take its course, meaning let Baby die.

My God, Baby doesn’t look sick, he wasn’t premature. He was 38 weeks, he was so big. Yet, inside him, he was so sick.

Dr. Andrew James suggested baptism and contacting relatives. CO and I do not have family in New Zealand. We came here for our tertiary education and remained here to live.

I didn’t want to inform my dad as Mum died in a tragic accident 20 months ago. I didn’t want to inform my in-laws because they were very traditional Chinese people, and might not want to know about a dead baby.