Never say never about our child

Until five years ago we were just an ordinary family, with a 3 year old son and a baby on the way. The baby became our daughter Isabel, who is a loving, happy, beautiful little girl much loved by her family and friends.

What makes us a little less ordinary now is that Isabel has Edward’s syndrome—she has an extra copy of chromosome 18. The way that medical professionals have responded to this fact has had a major impact on us, in both negative and positive ways. We are lucky; local paediatric doctors treat her as a valued child and focus on her symptoms rather than her syndrome. But we have had some unnecessarily difficult experiences with others, especially in the early days.

Three days after Isabel was born we were given her diagnosis, devastating enough to deal with but made even worse by the fact that it felt as if some of the doctors had stopped viewing her as a child worth helping any more. A particularly negative paediatric consultant told us categorically that Isabel would die within days, or at best weeks, and then gave us no support at all. One of the hardest things we had to deal with was when he told us quite bluntly that it was “not appropriate” to resuscitate Isabel should she need it; a conversation that still horrifies us.

After the initial gloomy prognosis, every subsequent illness at first made us wonder “is this it?” What made this so much harder for us was that in the first two years of Isabel’s life we were asked, at every hospital admission, whether she was for “full resuscitation.” Our answer then, as it is now, was always “and why wouldn’t she be?” Isabel has a fantastic quality of life as an important member of our family. Being asked the resuscitation question so often made us feel that doctors were questioning Isabel’s right to live, and to receive treatment, and that maybe they didn’t feel she was quite as important as other children. We cannot fault the medical treatment that Isabel received, but we minded very much that we were routinely asked this question. Isabel has no ongoing pain, and nor does she have a progressive degenerative condition. So, is it asked because of her disability, and because she doesn’t have a “normal” quality of life? How do you assess this? In any case, many children who are perfectly able have a much worse quality of life for some reason or another.

Isabel has a joyful, shining personality, and she is very determined. We started a daily exercise programme last year and have noticed that this has helped hugely with her strength and development. The thing we focus on is that she is making progress, however slow, and we never say never in our house any more.

We know that Isabel is an exception, and that she is defying the statistics. We hope though that she may be an inspiration for others to accept what our current, wise paediatrician said: “statistics can tell you what may happen, but they can never tell you what one individual will do.” For us, where there is life there really is hope, and we would like more doctors to have the “never say never” view too.