A long journey, but worth it

(© Private)

Still in the womb, Tom was diagnosed with hypoplastic left heart syndrome (also known as HLHS), the most serious of all heart defects in the 24th week of pregnancy. He would not survive without a series of operations, the first of which would have to be carried out shortly after birth.  

“Dear family, dear friends, we have some very bad news.” This was how I attempted to put our grief into words in emails written on July 12th 2004, in the 24th week of my pregnancy. This was the day our small world was hit by the proverbial bolt from the blue: our unborn second son Tom was diagnosed with the fatal hydroplastic left heart syndrome (HLHS). It didn’t take us long to find it on the Internet: all the web sites we called up said the same; HLHS is the most serious of all heart defects. Our child would die directly after birth if he were not given intensive medical care immediately. Our child would not survive without a series of operations; the first - and by far the most hazardous – would be carried out just a few days after birth. Three (im)possible paths: abortion or carry the child to full term and follow up with maximum care, including all the incalculable risks, complications and consequences. Or, give birth in expectancy of death. I yearned for nothing more than a fourth path, one that had nothing to do with any of the other three.

Tom stays

We knew straight away, there was no decision to be made: Tom would stay with us. My womb was the safest place on earth for him. If his heart defect was incompatible with life then he could and must live in my womb, that’s where his life would take place.

I decided that I would like to give birth where our oldest son was also born, in the anthroposophical hospital where there are such wonderful obstetricians. That is where we wanted to welcome Tom into the world and into our arms, to pause for a moment and - we hoped - be able to feel what we should do next. If we decided against transferring Tom to another hospital for surgery, a decision that would inevitably result in his death, I believed it would be possible only within the safe environment of this hospital – in as far as something this terrible can even be determined in advance.

Our home city has a university hospital with an excellent paediatric cardiological department and an experienced cardiac surgeon. Through a self-help group for parents of children with heart disease we became acquainted with two children suffering from HLHS. Our hopes kindled.

The time of birth drew nearer, and I was slowly, very slowly, preparing myself for what lay ahead. Knowing that a lot more would be happening to me when the labour pains set in made me less afraid. Knowing that birth has its own dynamics, that this would carry my along, that I would only be part of a whole, took some of the pressure off me.

Labour pains set in during the night on October 17th 2004. My entire body, my soul, my brain refused to accept this birth. I don’t want to give birth three weeks before the expected date of delivery; it meant that the last period of grace had already dwindled to nothing. They were gruelling hours before I eventually gave in to labour. This moment was filled with the golden light of the rising October sun. I looked out of the window upon trees aflame with colour against a blue sky. Tom was born at 4 minutes past 12 – much smaller and frailer than I had hoped, quiet, resigned, and very, very blue. The paediatrician requested our permission to put him on the respirator. We asked for time to think it through. Alone with Tom, I put him to my breast. If he already needed such intensive care, although he hadn’t even arrived properly yet, then he should be allowed to go, as quietly, and as peacefully, as he was born. But Tom – Tom drank. He drank and drank until his cheeks were full of colour – the paediatrician could hardly believe what he was seeing. There was no more talk of a respirator.

Tom was transferred on his second day of life. In his first 30 hours we were allowed to hold him in our arms almost continuously, all three of us safe and sound in a softly lit room.

Major operation

On Tom’s eighth day of life the operation was set for the following day. The very last period of grace was over. We were acutely aware that these could be his final hours. That night I was unable to leave my child’s side. Tom lay at my breast; they were hours full of peace and enchantment that gave me, and I am sure him too, the strength to face whatever was to come. Only then could I let him go when the morning came and it was time. I found it hard to go with him to the operating theatre. We put Tom into the hands of those able to give him his only chance of survival. I let him go. If he was unable to live under these circumstances, then he could, and should, go. That was my wish, my plea, my angst, my anguish.

A difficult day followed. Evening finally came – and Tom was still alive. He was stable; he was to be kept on a respirator and in an artificial coma for a few more days. On the morning of the expected date of delivery he opened his eyes as I approached his bed. From then on things improved. We never felt that he suffered; he lay in his bed with a resigned, peaceful expression, slept lots, drank without help and could even be breast-fed after just a few days.

When he was seven months old he had the second of three operations to separate his circulation; Tom came through this, as he did the final operation at three years old, with flying colours.

The journey was worth it

Tom (middle) with his two brothers. (© Private)

He is a canny, fun loving, wild, inquisitive, strong-minded child, and no one can tell that he has such a serious heart defect. He has a trusting nature and lives a normal life.  An important lesson: a child is not necessarily traumatised just because it has been hospitalised and undergone massive surgery. Quite the opposite in fact: we are convinced that Tom has always been aware that maximum medical care is  his only chance of survival.  Looking back, I would choose surgery with Tom again and again. Had I known at the time about the large number of happy HLHS children I have since met through the self-help group and the Internet, I would have found the decision easier.

Author(s): Dr Stefanie Weismann-Günzler
Last updated: 2010-04-19