Born after a healthy pregnancy and delivery, with little reason to suspect that all was not well, my daughter was initially diagnosed as a result of addressing parental concern, rooted in nothing more than powerful instinct. 12 hours, (And a transfer to the Royal Brompton) later, our lives had been turned upside down, from absolute unbridled joy to sick icy fear, thrown into a deeply scientific and experimental world of cutting edge cardiac medicine.
My daughter was given a complex diagnosis– transposition of the great arteries which required immediate surgery for her just to survive. Much is written about parental bonds – all I can say is that I craved life for my beloved baby at any price – and I was prepared to support her through chronic disability, (Although I had no idea what that would look like, or what challenges it would present) we all just wanted her to have a chance. The lack of a crystal ball is fortuitous – had we anticipated the path we would all tread, the suffering and the challenge, would we have felt the same? The focus for her life, as well as our care of her, was that she would always remain on the right side of a very fine line, which identifies the distinction between an acceptable or good and a poor quality of life.
Returning to my ante natal group (Post two operations and unbelievable trauma), listening to new friends describe their more than understandable anxieties relating to bathing, sleeping and feeding, I recognised that my beautiful daughter, (who we had to hold so carefully as she had wounds under both arms – a result of the initial vital life saving surgery) had taken us all to a different, very isolated place, changing our perspective forever. As a mother I was riddled with guilt – what had gone wrong, I had wanted a child very much – but this decision had resulted in my daughter’s inexplicable illness and acute suffering. We were all left with a stark choice – to wallow in self absorbing pity, wrapping this child up in cotton wool, or to take the advice of our much valued cardiac consultant paediatrician, which was to let her really live; whilst accepting that we couldn’t possibly expect others to ever understand, unless, they were in a similar terrifying position.
As a family we watched her and many other children, cope with endless intrusive life threatening hospital procedures; (Over 40 in my daughter’s case) watched them hang onto life by their fingertips, observed the absolute agony of their parents and families. Stood by her intensive care bed for hours, day after day, seeing the world carry on outside the hospital windows, but on the unit, time for us all, was suspended, whilst life was bravely battled for….to be continued.