Holly spent six months on Berlin Heart before an organ match was found. Here, her mum, Lisa, talks about their journey from diagnosis to transplant.
"At 10 months old, Holly got a chest infection and when, after a course of antibiotics, it still hadn’t cleared up our doctor sent us to our local hospital in Dublin for an X-ray. Holly’s heart was very enlarged, and a few days later, we saw a cardiologist who diagnosed her with dilated
cardiomyopathy.
"We spent two weeks in hospital and Holly reacted well to all the medication. For two years, we had regular hospital visits but thankfully, although Holly’s heart function was poor, it wasn’t affecting her quality of life. She was a happy bubbly little girl. We were told that one day Holly would need a transplant but to us, she looked so well, we honestly thought it was a long way down the line.
"On the morning of Holly’s brother’s christening we knew our lives were about to change. Holly was pale and tired and slept on the way to the church. She just wanted to be carried all day. We knew this wasn’t our little girl.
"The next day, we found ourselves back in the hospital in Dublin. We didn’t know it would be seven months before we would take her home again. A week after being admitted, Holly deteriorated and was rushed to the intensive care unit (ICU). Our little girl was dying and the only thing that was going to save her was a heart transplant.
Transferral to Great Ormond Street Hospital (GOSH)
"Unfortunately there is a long waiting list for transplant and Holly simply couldn’t wait. Our only option was to fly over to Great Ormond Street Hospital (GOSH) in London, where she could be put on a
Berlin Heart. There were two other children on Berlin Hearts at GOSH, as well as a little girl who was on medication to keep her heart working while she waited for transplant. We realised then it was going to be a long time before we got home.
"Holly recovered well on the Berlin Heart, but it was a very tough six months. Both my husband and I had to be fully trained on the Berlin Heart before we were allowed to accompany her off the ward and move around the hospital.
Life on the ward
"Alan had to go back to work. He would travel to London every Thursday evening and fly home every Sunday night. During the week, I had to depend on the nurses being free for an hour to help us downstairs, just to give Holly the chance to get away from the ward and go to the coffee shop or chapel.
"Alan and I have two other children, one of whom was three months old at the time. I was spending about 15 hours a day looking after Holly so it was very hard to cope with a small baby too, especially in such a small space.
"Alan and I took it in turns – the baby would stay with me for a few weeks at a time, then Alan take him home for a couple of weeks where my mum could help look after him. Our older son travelled over every few weeks for weekends. Saying goodbye to my boys broke my heart every single time; it never got easier.
A positive match
"Six months after Holly was put on the Berlin Heart, I got a phone call to say they had a positive match. Alan rushed to the airport and managed to get the last flight to London.
"It was the middle of the night when they took Holly to theatre so thankfully she didn’t realise what was going on. I sat her on my lap in a wheelchair and we gave her a big kiss as she fell asleep in my arms. They put her on the bed and we didn’t see her again until seven hours later when she came out of theatre. All went well.
"A week after her transplant, Holly was moved to a high-dependency bed and a couple days later we were transferred to a room of our own. She recovered amazingly well and first realised she wasn’t attached to a machine anymore about 12 days after her transplant.
"She stepped outside the room on her own and suddenly realised what she’d just done. 'Mam, I’m outside on my own, what do I do?' 'Just keep walking,' I said. She walked proudly down to the nurses' station with her head held high. 'Look at me, I have no Berlin Heart! I can walk on my own!'
Newfound energy
"It’s only been a few months since Holly’s transplant and she has made fantastic progress. She has amazing energy - something she never had before - and a great personality, thanks to all the attention she received from the doctors and nurses at GOSH.
"We returned to GOSH five months after Holly’s transplant and it was lovely to see all the staff again. They’d become such a big part of our life for such a long time. Holly was so excited going back up to
Ladybird Ward, and gave all the nurses and doctors the biggest hugs ever!
"We will always be extremely grateful to the staff at GOSH for getting us through the hardest time of our lives. But we will be eternally grateful to the family of the donor who made the decision to donate their child’s organs. They didn’t only save our little girl’s life; they saved our entire family too."
