Isabel
Nearly 7 and a half years ago, our beautiful daughter Isabel was born. It was quickly established she had trachea-esophageal fistula: a condition where the esophagus isn’t joined up, but where there is also a fistula from the stomach to the lungs – obviously, a life-threatening condition. All day doctors examined her looking for other problems, as she was also small and quite floppy, and there were queries about whether she might have a heart condition. Doctors murmured about low set ears and possible genetic testing, but the main priority was to get us to the regional hospital for surgery: we were transported the next day.
On arrival, it was evident we were waiting for genetic results but not really what the implications of this were. One surgeon did mention that in some cases “we wouldn’t go ahead with surgery” but to be honest Isabel was so alert by now that we didn’t think this could possibly apply to us.
On day 3 we had the results of her tests and our world fell apart – Isabel, our beautiful daughter, had Trisomy 18. We were told to expect that she might live for days, or weeks at best.
The doctor asked if we wanted to go ahead with surgery – it still appalls us to this day that there was any question over this, and that we would have been entitled to say no. We do realise though that we are amongst the lucky ones, that some people are not even given this choice.
Surgery went ahead and Isabel recovered well. One particularly insensitive doctor told us “it would not be appropriate to resuscitate Isabel” should anything happen: this ultimately triggered my article for the BMJ. http://www.bmj.com/content/350/bmj.h1246
At one month old Isabel came home for the first time. We were terrified that every day might be her last – at first, we were scared even to do the shortest of car journeys.
But fast forward nearly 7 and a half years and here we are now. Our lives are better, richer and fuller with Isabel in them. She is full of love and joy, and absolutely living life to the full. Yes, she has significant developmental delays and is certainly medically fragile, but hers is very much a life worth living. I have written a bit about our journey on a small blog which can be found here: https://ourmiracledaughter.wordpress.com
I have recently become a trustee for SOFT, as part of my mission to help make a difference, and to spread the word to medical professionals that our children are valuable, beautiful human beings and should be treated based on their symptoms, not their syndrome. Our work continues!
Alison