Peace and pain

It was Christmas eve 1992 when we discovered that I was pregnant. We wrote “to a prospective proud grandfather” on the gift tag of my father in law's Christmas present. Both of our families were delighted for this was to be the long awaited first grandchild.

At ten and half weeks, the ultrasound scan showed a tiny form with arms and legs which waved. I declined blood sampling for (alpha) fetoprotein and this first decision seemed easy. An equally pregnant friend and I celebrated reaching 12 weeks by buying portable nursery monitors. One night, just past 18 weeks, away from home and unable to sleep, I felt the first “tap, tap, tap” of the life inside me. At 20 weeks exactly my husband was able to feel kicking too. The following day, the Monday before Easter, I was off work with a bad cold. Lying in bed with little to occupy my mind, I began to panic at not having felt any movements since the previous day. My midwife had said it was always better to telephone than to worry, so I telephoned and she arranged to meet us. Hearing the wooshing of our baby's heart was such a relief that we would have returned home there and then, completely reassured.

Concern at my modest bump, however, resulted in another ultrasound scan. This time it showed profound oligohydramnios and multiple abnormalities. I remember feeling dazed and our kind obstetrician leaning forward at the end of the consultation which followed saying, “What I am telling you is very bad news” as if afraid that we had not understood. He was unable to give us an accurate prognosis although he thought it unlikely that the pregnancy would continue to term. He did not mention the word termination in that conversation. He suggested chorionic villus sampling but said he wanted no decisions yet and sent us away for three days to let the news settle.

We went home and cried. Cried for our hoped for normal baby that we had lost. My stomach hurt and I remember thinking, “Oh good - I'm going to lose it now.” We felt as if we were drowning. All our previously held principles faded with the initial horror of this “thing” inside me. I felt that I was no longer pregnant. On the Tuesday morning I tried to get into a pair of jeans which had not fitted me for two months. Over the next three days, however, the piece of driftwood which we found and clung to was that even this tiny, damaged life was precious and should not be abandoned. As if conscious of the need to remind us of its importance, the baby kicked more energetically during these days than it had ever done before. By the Thursday we were certain that we did not want any investigations that would not be of direct benefit to this child. We returned to the obstetrician, scared of being talked round but, to our relief, found our decision supported.

* “Again we were left with the certainty that we could not abandon her.”

The months that followed were hard. We were learning to love this different and unexpected child and yet never knew when we would lose her. We had tremendous support from family, friends, church, and colleagues - even people we had never met - and we needed every ounce of it. A scan at 25 weeks showed only a tiny rim of lung tissue and we were told that the prognosis was grim.

It was agony to feel the lively kicks and head butts of a growing child inside and know that we would never care for her. Social encounters with strangers or acquaintances were stressful. We had to brave many kindly inquiries as to what we wanted and whether we were excited and how much I had knitted or bought in preparation. We were grateful for friends and colleagues who spread the word about our situation for us.

As the weeks rolled by our obstetrician encouraged us to think through what we wanted to happen at delivery. Our baby was breech but small. It was unlikely that there would be a mechanical problem with vaginal delivery but the lack of amniotic fluid might result in compression of the umbilical cord. She was unlikely to live for long and so he did not recommend a caesarean section as it carries a small risk and has implications for future childbearing. The question of monitoring arose. Our child was likely to be in distress during delivery. Would it make sense to monitor and not intervene with emergency surgery when distress was diagnosed? Would it make more sense not to monitor? After the previous decisions this one felt too difficult. Our heads were spinning and I began to dread the future in a way I had not done until then. I wished we could just beam her out of me or that I could carry her inside me, alive and kicking, for ever. Again we were left with the certainty that we could not abandon her. We hated the idea of going through labour knowing all the time that she would be having a rough time. Not to monitor would seem uncaring and if I was to have a caesarean section I wanted to be awake.

On the morning of 3 August 1993 our obstetrician performed an elective caesarean section. Jennifer Grace was lifted out - a pink and squirming, beautiful baby. She was held over to us to touch and then taken away by the paediatricians. We tasted real joy. My husband was able to join her in the paediatric department and introduce both sets of grand-parents to this “real wee fighter.” I was able to visit her when she was 3 1/2 hours old. A scan confirmed renal agenesis. Pulmonary hypoplasia meant that ventilation was of only short term benefit. To prolong it would have risked pneumothorax. For her last five minutes or so she was given to us to hold and say goodbye. No one rushed us and eventually my mother came in to the little room and helped us dress her and take some photographs. She had lived for five hours.

Why am I telling this story? It is simply to let you see what followed from the decisions that we took. Perhaps it will cause some to rethink whether termination of pregnancy is the best way to care for the parents of a severely handicapped fetus. Since Jennifer's death we have looked back on those months of pregnancy as special because she was with us. We can give thanks for her and grieve for her as a much wanted and forever to be missed member of our family. We were able to have a funeral to celebrate her life and pay tribute to her. We can visit her grave, leave flowers, plant bulbs. We can talk about her. If we have other children we will tell them about their older sister. We can do all these things which help soothe the pain of loss.