“Why don't you sue?”BMJ 1994; 308 doi: https://doi.org/10.1136/bmj.308.6940.1377 (Published 21 May 1994) Cite this as: BMJ 1994;308:1377
- L Lindsay
Our daughter was born with spina bifida. She has a large lumbosacral myelomeningocele with an associated neuropathic bladder, patulous anus, and neurological deficits of her legs. Fortunately the lesion is closed with excellent skin cover and Emily shows no signs, as yet, of developing hydrocephalus.
We were not expecting our first child to be born in anything other than perfect health. I had done all the right things, including taking folic acid supplements as had just been recommended by the Department of Health when we were planning the pregnancy. We have no family history of neural tube defects and I had had an uncomplicated antenatal period. My husband, who was working in France at the time, returned home to be at my side when I went for my routine 20 week ultrasound scan, our discussed intention being that he could be with me for a termination of pregnancy if the worst happened.
The worst did not happen then. Normal vertebrae, normal kidneys, we were told, so off we went happily to await the new arrival. The shock at Emily's birth was immense. There was an uncomfortable silence in the labour room when I pointed out her lump, so far unnoticed by the otherwise excellent midwife. We had to wait for an interminable six hours before we saw the paediatric consultant to have what I already knew confirmed. Meanwhile I had had to bite my tongue against screaming when one midwife had whispered to another, “Be careful of the baby's back because she has a probable occulta.” Why couldn't she talk directly to me? Why couldn't she either get the diagnosis right or shut up?
I have nothing but praise for the paediatric medical and nursing teams who have looked after us with the utmost care, consideration, and professionalism since then, especially when Emily suffered an episode of acute renal failure, secondary largely to a severe urinary tract infection. The people I do not have praise for are the friends, acquaintances, nurses, and others whose immediate response on hearing our story is, “Why don't you sue - you could get compensation for them missing it?”
“She is a delightful, happy baby girl who happens to have been born with some disabilities.”
Emily is not an “it.” She is a delightful, happy baby girl who happens to have been born with some disabilities. I am not sure now whether or not we could have terminated my pregnancy had we known at 20 weeks. After all, she has only physical handicaps. We will never know. We were not given the opportunity to make an informed decision. Now that she is here we enjoy her enormously and take great delight, like any other parents, in watching her daily development. It is not the fault of the hospital that Emily has her disabilities, they were present early in her gestational age. She was not misdiagnosed on pupose, although it is clear with hindsight that the ultrasound scan must have been performed inadequately. It is conceivable that the hospital could be held to account for failing to forewarn us of Emily's condition, but contrary to the beliefs of most expectant mothers the ultrasound scan is only a screening test, not a diagnostic test.
Perhaps as a society we have all become too trained to believe that we will produce only perfect babies and only too ready to try to lay the blame on someone else's shoulders when we do not. God gave us Emily as she is and we will go on enjoying her as she is. We do not doubt that we will have many troubled times ahead, but with the continued support of our family, friends, and the medical profession we will weather them. Our daughter certainly seems to have the determined personality necessary to do so. We do not need to spend years of our time and large amounts of our money on bitter acts of vengeance through the law courts. Any anger that we do feel about her condition should be channelled to much more positive action for Emily. Nothing can take away Emily's spina bifida, so we must use our energy to help her to maximise her potential.
We will never stand up and say that we wish that Emily had never been born. She has already brought us such joy and happiness in three months that we do not find it difficult to forget the sadness and worries. Her physiotherapy and intermittent urinary catheterisation have already become part of our daily routine. We feel that she is essentially no different to care for than any other child at present. It is merely that some of her needs are catered for in a slightly different manner. A positive attitude and love will be the things that matter for Emily, not the mechanics of her bodily functions.
We will always be immeasurably greatful to our close family and friends who have been so supportive to the three of us. None the less, we would like the many other people to appreciate our daughter for the beautiful and worthwhile person that she is - not the baby with spina bifida who should never have been born.