Carol Davidson - A Mum's Perspective

Mum of Kaylee-The UK’s first surviving heart transplant baby who received a new heart at The Freeman Hospital in October 1987 at the age of 5 months old.

I hadn’t really thought about transplantation at all really as a teenager. Like many others, at college enrolment aged 16 years old, I signed what was then the kidney donor card along with all my fellow students however, had no real understanding of what it was all about and I certainly didn’t talk to my family about organ donation. I simply put the little blue and red card in my purse. I never ever dreamed that signing that little blue and red card would have such a dramatic effect on my life and that of my own child in the future.

One day, it may be you, waiting for a family you have never met and probably never will meet to decide your future, or the future of your family member dying on the transplant list.

Kaylee’s heart transplant came as a bolt out of the blue. I was 19 years old when Kaylee was born and she was a very healthy baby. Then suddenly, at the age of four months old, during what seemed like a general flu type baby bug, she was transported to a world of intensive care and intravenous life support drugs, literally fighting for her life. Doctors I had only met that day were explaining that she could die at any time. Worse still, she needed an operation that was so experimental; two previous babies in the UK had died following surgery. There was no one to turn too, no one to talk too and I felt like I was living in a bad dream and at any moment, I prayed I would wake up.

However, I didn’t wake up and this was reality-looking back at in now, I still recall how the enormity of it all escaped my notice many times-all I wanted was for my baby to be well. I was racked with guilt as a new first time mum-was their something I should have done, was it my fault, why was this happening to my baby? The hospital gave amazing reassurance and I had no choice but to trust them. Although I didn’t realise it at the time, this was the most important decision of my life and also Kaylee’s. My saviour throughout all of the madness was the transplant coordinator, Lynne Holt, who held my hand for the whole transplant journey and remains a close friend to this very day. We travelled a whole new journey together as a team, a very close team with no idea of the outcome. We are still on this journey today.

Waiting for a donor organ was unbearable. Kaylee was initially on a life support machine for the first four weeks and each day, her life hung in the balance, waiting for a chance that may never have arrived. Baby transplantation was not common although initial success had been reported in America where several very small babies had received new hearts and were doing well. However, it was so new; these babies were literally only transplanted weeks before. I felt constantly guilty-I was waiting for a family to lose their child so my child could live. I was praying for a family to make that decision. In hindsight and as many other parents feel this way, I now realise that even though my baby was so desperately poorly, some one somewhere sadly would experience what I didn’t want to do, regardless of whether Kaylee needed a new heart or not. However that did not stop the pain and guilt at the time. When the call came and the surgery began, I hid in the little waiting room and cried oceans for the family whose baby had died. To this day, I am still very emotional when discussing this particular issue. This will never change.

Now, 20 years later, looking back over Kaylee’s life and my own, I have spent my lifetime and her lifetime planning and campaigning for others to have the same opportunity, in a way, to repay the gift. Kaylee is an amazing girl and every day, I am incredibly proud. At the time, it seemed such a private and insular world, surreal, with the slight hum of amazement. I was aware that this was groundbreaking surgery however, in my naivety; I thought it would make the local newspaper. Instead, the news of Kaylee’s successful surgery was broadcast on the Reuters news agency world wide and our insular world was suddenly invaded by world wide publicity. Even my Health Visitor called from her holidays in America to check all was well. Sacks of mail, presents and Get Well cards appeared from all over the World, delivered to the Freeman addressed to Baby Kaylee. We even received Get Well cards and letters from several inmates at Durham Jail. All are carefully preserved in a special box. Still, to this day, press releases featuring Kaylee are hot news and her progress has been monitored and celebrated via birthdays and special occasions-I feel very proud when other parents and recipients say that she has been an inspiration to many, throughout their own dark days. Kaylee celebrates the 20th Anniversary of her transplant in October 2007.

Transplantation creates miracle stories every day however the heroes are the donor families who selflessly give to others with no gain for themselves. Each and every day, I give thanks to the family whose brave decision utterly changed my life and gave life to my child. There is no greater gift. Thank you is such a small word and just never seems to quantify how I feel as a mum. A stranger, whom I have never met, gave the most precious gift, the gift of life, to my very own baby. I owe a huge debt to this family and I am forever grateful, each time I look at Kaylee. On each anniversary, amongst the celebrations, my family and I spent a reflective quiet time remembering the amazing family who made this possible. Maybe we will meet one day.

Kaylee is one story, one life amongst thousands nationally and World Wide. So, how does this affect you? It’s simple really-this could have been you! I was an ordinary young mum, leading an ordinary life and looking forward to caring for my new baby and carrying on with my ordinary life! And this happened to my baby. The reality of the concept of losing a child was non negotiable and deep down, throughout all of the anguish and fear was the unchangeable maternal instinct to protect and look after my baby. Imagine if this was taken away from you and you had to rely on the generosity of a stranger. I did! Look at your own children, your parents, your own family members and friends. Imagine you were in this position and what would you do? Transplantation has no boundaries. Where ever you are in life and from which ever social background-there is no escape. Wealth does not buy health. So don’t make the mistake of saying you don’t want to talk about it as it doesn’t affect you!

Statistics from UK Transplant show us that you are far more likely to need a donor organ in your lifetime that you ever are to become a donor. Would you receive without considering giving the gift of life to others? I speak to many families on a very regular basis who have donated their loved ones organs in extremely difficult and emotional circumstances. Nothing will ever replace the feeling of grief they feel when a loved one has passed away, often in tragic circumstances however, they gain great comfort and tinged enjoyment that their decision has led to such an amazing outcome-saving another life. Many describe this feeling as bittersweet. Many donor families play a major part in the close world of transplantation and their contribution after such a tragedy is testament to their special place in this world, as the unsung heroes.

Talk about organ donation with your family. It only needs to be one conversation in a lifetime. Make your wishes known. Speaking to donor families, the hardest decision is to have to make a decision without knowing what their loved ones wishes were. At a time of deep emotional turmoil for any family who have lost a loved one-this is a question they simply don’t want to consider, simply because they don’t know and had never had that conversation. Families who do know are able to make that decision with a clear knowledge that it was a specific wish. Please become one of those people. One day, it may be you, waiting for a family you have never met and probably never will meet to decide your future, or the future of your family member dying on the transplant list!

Carol Davidson
10/8/07