Jennifer's story

posted 11 Jan 2012, 11:39 by Olly Cruickshank
Jennifer Turner was born stillborn on 7th July 2004, a victim of the genetic disorder Edwards Syndrome. The condition results in poor growth in the womb of all structures including the vital internal organs. In the words of the consultant, Edwards Syndrome is simply incompatible with life.

Jennifer was a pretty girl, tall and slim, with delicate features and an intelligent face. Her long slender fingers mark her out as an artist, or a gifted musician. She was a bright girl: she would go to University, maybe abroad somewhere, maybe meet someone there and stay to get married. Most of all, she was very deeply loved, her parents’ pride and joy.

Except that Jennifer never lived more than eighteen weeks in her mother’s womb. She was stillborn, after a short, but very real, labour, tiny, frail, but perfect in every way, down to her tiny fingers, toes, and fingernails. Perfect, except that she had been conceived with a genetic complication that meant that she was never meant to live.

We had tried for a child for four years before Jennifer came. We had given up hope by then. All our efforts had seemed to be in vain. We were growing older, and our time may have been running out. But then, at the age of 39, we found out that Jennifer was on her way. We were so happy, we started to keep a diary of the pregnancy, something we could show the child when they were old enough to understand. My husband hoped for a daughter, but I did not care either way: so long as the baby was happy, that would be all that mattered.

We began to think of how we would need to reorganise the house, and finally implement the projects we had put off for another day. So we organised new furniture and a renovation of our bathroom, things that would be useful to us whatever happened, mindful of making too many plans too early.

To begin with the signs were all good, so good that once the bad news started to come in, we did not fully understand. At the scan at 13 weeks, we knew something was wrong because of the delay in telling us anything. They had measured the fluid at the back of the foetus’s neck, but not told us what it meant. Instead they asked us to wait in a consulting room. Even what we were told that day did not prepare us for the eventual outcome. They said that it was likely that the baby would have Downs syndrome, heart problems and limited intelligence, and suggested that because of this the best thing for us to do was to terminate the pregnancy.

But that was never an option: we read up about the subject and knew that whatever else happened, and no matter how difficult it might be, we would give our child the best chance possible. So although we knew we would need to have the invasive tests done, which would determine the extent of the genetic condition, we refused the CVS in favour of the amniocentesis, as we wanted to reduce the risks of miscarriage to a bare minimum. We had appointments set up right through to the baby’s due date: tests, scans, even an appointment at Guys Hospital in London, where the nature of any heart defects could be detected and hopefully corrected. But the result of that amniocentesis made all the rest irrelevant: our baby carried the most severe form of Edwards Syndrome: the child would at best be unresponsive, immobile and spend most of its terribly short life in the hospital; at worst she would be dead before leaving the womb, and we would wake up every morning, worrying whether she were still alive.

We were advised that, in the circumstances, all we could do was to have what the hospital called a ‘medical termination’, to clear the decks for what would be a hopefully more healthy baby. We were not rushed; we spent a solemn weekend thinking the situation over. Ironically, that weekend, the furniture we had ordered arrived, though we did not really notice. Sensing few other options, we agreed to the termination, and against all parental instinct I forced down the pills that would make my body reject the baby inside me. Somehow though, I had not felt the baby move for two days, and I hoped, for her sake, that she had already gone.

Two days later, in a special room away from the rest of the Delivery Suite, my labour was induced. It took five hours, and left me in pain, exhausted and emotionally shattered, but somehow, it made Jennifer real. The tiny baby – our baby – which we held in our hands for three hours that evening before they took her body away was such a wonder to us: she was a little baby, even at only 18 weeks: if she had not been so silent and so still, there would have been no sign of anything wrong. To us she was beautiful, and though the hospital chaplain who visited us was so kind, nothing anyone could say could reach us and make us feel any better: we had kept the diary going, all through the tests and the strain, we had some photographs – one in black and white that the hospital photographer took a day or two later, and the colour ones we took ourselves – a hand- and footprint the hospital staff did for us, and the blanket they wrapped her body in: that was all we took home of our daughter.

We had never wondered – as some suggested we might – why this had happened to us: to think like this would be to suggest that there were other parents in some kind of lottery. In fact, although we knew this was not true either in the sense of no other parents experiencing this situation or because we did not have any support from friends and family, we felt totally alone, fighting for our baby as long as we could. Now that it was over, we were empty: what was left was the routine, going back to work, coming home to each other, wondering whether we had done the right thing.

The hospital arranged the funeral for us – we could not bear to do it ourselves – and Jennifer was cremated at a lovely service at the beginning of the following month. We planted a rose for her, and gave her some toys which would survive outdoors, and which we have since brought home to our garden, so that even if we cannot go to visit her grave, we can still spend a little time with our Jennifer.

We were told that the funeral would help us to lay her to rest, but this was not the case. We became more sensitive, both to the fact that as far as our friends were concerned, our daughter seemed all but forgotten – though in truth they were probably being careful of our feelings – and also very light sleepers, waking at the slightest sound in the night. This became such a problem that we moved into the back room, just a mattress made up on the floor, and our hospital photograph of Jennifer, which we kissed every night before we went to sleep, terrified lest the bitter pain and memories of her began to fade.

On Jennifer’s due date, however, our feelings changed. We spent the day talking over what might have been, and what should have been. During the day, the feeling that I should have been carrying a baby – that had been with me for all these months – lifted. Not without some feelings of guilt, we understood that having gone through the previous nine months my husband and I now had a stronger bond, and that even if we did not consciously think of Jennifer every day, she would still be our first born daughter, and would still be with us. At first we were terrified if at the end of a day we realised that we had not thought about her, thinking that meant we were forgetting her, but as time went by we realised that not consciously thinking of her was fine: she would creep into our thoughts on her own, and we would be happy to think that if she were with us now, we would be showing her something magical.
We bought her a Christmas card, and on the anniversary of when she was born, we bought her a 1st year birthday card, and placed it next to her photograph for her to enjoy. And of course we still think of her, if not all the time, at least once a day. And we both visit her grave whenever we can, and each time we stand before the rose and the little plaque that bears her name, and weep for her.

But our consultant at the hospital was probably right in their advice to advance Jennifer’s inevitable early death: a little after six months later we returned to our consultant at the hospital, and she confirmed that not only was I expecting again, but that this time, I would be having twins. They are very healthy and very beautiful, playing together sitting up on the floor in front of me now, and though I love them both very dearly, I know there is someone else here, keeping an eye on us, but whom I would give almost anything to have playing here with them.