Disability and short life expectancy

Josephine Treloar

Hope Thank you for the wonderful lovingly written account by Rachel Murray in the February CMQ. The life of babies with disability and short life expectancy is a realm of human experience which is being increasingly described. Descriptions of the lives of babies with such conditions portray a facet of human existence which only a few people experience in life. It mirrors the experience my friend had when caring for her husband after a stroke with an inflammatory brain condition. She said, “It was a really special time”.

In my own experience 10 years ago I was also encouraged by the memories of my conversations with mothers I had previously interviewed who had been through similar situations; each was at peace and happy to recount their story. I also felt that God would not let down all those friends who had fought for the sanctity of unborn life.

I was less than 20 weeks pregnant when I developed pre-eclampsia. It must have been hardest for my husband as he knew neither he nor I would consent to an abortion and he had an 8 week waiting game till the baby became big enough and showed enough maturity to have a good chance of survival. The medical staff were very supportive.

Hope Lucy Mary Cecilia survived a week and remains and important baby in the lives of her siblings and others. In addition to the effect of severe, prolonged pre-eclampsia she had another condition Patau's Syndrome which would have affected her life expectancy.

A year later we discovered an American website livingwithtrisomy13.org. We looked and saw pictures of a little girl with Patau's playing in the snow with her brothers and sisters. It was a strangely happy moment and we knew that we had all given Hope that chance; we her parents, her siblings, those who cooked meals for the family, aunties who came and helped at bedtime and with homework, the doctors and midwifery staff and the neonatal staff, one of whom stayed up all night the first night as her condition was initially very unstable. A huge number of people kindly attended her funeral. In the words of one lady, Hope became ‘everybody’s baby’, as several mothers present were in effect attending the funerals of their babies who they had lost through stillbirths and cot deaths, at a time when babies were just taken away with no funeral.

Abortion would have, in more ways than one, robbed the world of Hope.