Carol Davidson’s little girl has just celebrated her 18th birthday, but her parents once thought she wouldn’t make it to her first…
The consultant reached out to hold my hand. "I’m afraid there is a complication," he said. "You’re daughter has cardiomyopathy and will need a transplant soon if she is to live."
Just five months earlier our little Kaylee had been discharged from Sunderland Royal hospital where I had given birth to her as an apparently healthy and happy baby. Now we were being told that a high-risk operation that had only been performed twice in the UK was the only way to save her life.
But how will she cope?" I sobbed. "She’s just a baby."
Everything had been going really well until then. I had met my husband in 1985. We were thrilled when I became pregnant with Kaylee, who was born in April 1987 and we married when she was six weeks old.
She was just five months old when I noticed there was something not quite right with Kaylee. She would not feed and appeared to be making a groaning noise. She was also constantly pale. Instinct told me something was wrong, so I took her to a doctor.
He thought she had a chest infection and prescribed antibiotics. However, the next day she was worse and had started to look blue around her lips. We went back to the GP, concerned that this was something more serious.
The local doctor did not know what was wrong with Kaylee but suspected meningitis. We were rushed to Sunderland General hospital in an ambulance and we were devastated to find she was seriously ill. The doctors at the hospital X-rayed Kaylee’s chest to find that her heart was severely swollen. We were then rushed to Newcastle Freeman Hospital to the children’s heart unit.
After a few hours Kaylee was taken to intensive care and placed on a life support machine to help her breathe.
The consultant told us that she was very poorly and that we were lucky to have taken her to hospital as she could have died at home during the night.
A week of tests went by and finally we were given the terrible news. "Kaylee has got something called cardiomyopathy, a disease that affects the heart muscles. It could be serious." I was stunned – I had no idea it was going to be something so serious.
We were told Kaylee would need a transplant if she was to survive – without one she could die.
The consultant took us to one side to explain the situation further. Neither of us was prepared for what he was about to say.
"There are very few organs that become available for children at such a young age as baby transplants are very rare. If she was lucky enough to get a compatible heart, you would need someone willing to perform the operation. The operation that Kaylee needs has only been performed twice on children as young as Kaylee. Neither of them were successful."
We were told the chances of receiving a donor heart were very slim and that Kaylee would die without one. But this was her only chance.
Mark and I were stunned into silence. Not only was there a slim chance that a heart would become available for Kaylee, but the operation was unlikely to be a success anyway.
The transplant surgeon and the paediatric consultant told us that surgeons in America had had recent successes with baby transplants, and he advised us to seek medical help in America.
He returned half an hour later to explain to us that Kaylee was not well enough to make the journey, and if we were willing – he would attempt the surgery if a donor heart became available.
The three of us sat in silence.
"She’ll pull through," Mark Said gently. He was trying to be strong for me, but inside I could see his heart was breaking too. We decided that if this was Kaylee’s only chance, then we needed to put our faith in the medical team at the Freeman hospital. We agreed Kaylee could go on the active transplant list.
Six weeks later, a compatible heart became available from Europe. Mark and I panicked and spent the night worrying. However, the transplant was called off in the early hours of the morning as the heart was not suitable.
The next morning, another donor heart became available and preparations carried on all day, until she was finally taken to theatre at 2130 on October 13 1987.
The wait was unbearable. All I could think of was my baby lying alone on the operating table. I just wanted to be able to hold her, and look after her. It was horrible knowing that the operation could kill her as it had done the two previous times it had been preformed. It was killing us to wait to know if she was ok, and if she was, her body could still reject the heart that some other family had prayed would be ok for their little child.
We were racked with guilt that someone else’s baby had died that day, but we were glad that Kaylee had a chance. It was the strangest emotion I will ever experience – and was very difficult to deal with.
After five long hours the consultant came to find us again.
She was going to be alright. The surgeon stated that the operation itself had technically been a success but that we still had a long way to go. During the next 24 hours Kaylee’s heart stopped beating four times. We were in a terrible state wondering if it would be better to let her die naturally.
The next day everything seemed to settle down and she recovered in an amazing way over the next 10 days. She came off the life support machine and was pink!
That day Kaylee made medical history at just five months old when she became Britain’s youngest ever heart transplant patient. She is still one of the longest surviving baby heart transplants in the world, certainly in the UK.
Since then, Kaylee went from strength to strength and she has taken part in the annual Transplant Games, competing in the 100 metres, long jump, badminton, and obstacle race, and winning a whole host of medals.
She has been selected to represent Great Britain at the World Transplant games in Canada in July 2005 and previously represented Great Britain in France in July 2003.
She has just celebrated her 18th birthday. We’ve had 18 years we thought we would ever get to share with her. She is pursuing her dream of becoming a professional dancer and choreographer, studying performing arts at the City of Sunderland College.
At the time, Kaylee was the youngest child in the UK to have a successful heart transplant although since then, with advances in surgical techniques, even younger children have had transplants.
I do think about the donor. I am so grateful to the donor family for the courageous decision they made to donate their child’s organ, it has given us our daughter and we will be forever thankful.
I have learned that transplantation is not a cure – it is the swapping of a life threatening condition for a medically managed condition. We must never become complacent about transplantation as a magical cure but it is indeed a new lease of life for many sick people who have been given a second chance – one they intend to use.
We do not know what the future holds for Kaylee, but she is indeed an amazing girl with a zest for life. We life for the moment and each milestone for Kaylee is a milestone for medical history.