Daithi MacGabhann was born with rare hypoplastic left heart syndrome – which effectively means he has only half a heart.
About 250 UK babies are diagnosed with the condition annually, according to the British Heart Foundation.
In the first 10 days of his life Daithi, from Belfast, underwent multiple open-heart surgeries.
And at one point his parents, Mairtin and wife Seph, a trainee paediatric nurse, were asked if they wanted to turn off their only child’s life support system.
Mairtin, an Irish language teacher, said: “The surgeon said surgery had little chance of working and we were given the option to stop treatment.
“At that point Dai opened his eyes and stared at the surgeon, even though he was on life support and heavily sedated.
“Because he opened his eyes we agreed to go ahead and help him. He is unbelievable now, he has started preschool and the operations have given him time and some quality of life.
“I said, ‘Dai, what is Santa bringing you for Christmas?’ He said: ‘A new heart’.
“He loves football and boxing and he is very active. We have to stop him when his lips go blue because he has a lack of oxygen. But he always tries his best.
“He knows he needs a new heart. But the chances are slim. There is a shortage of organs in general and when you get to children it is smaller again.”
Mairtin added: “He cannot have any more surgery to help him and he doesn’t have many years left without a donor heart.
“We were told when he came out of intensive care that we should start planning his funeral, yet three years later he’s here – though he doesn’t have a lot of years.”
Figures released today as part of the NHS campaign show that 185 children in the UK are waiting for a call offering an organ and the chance of a better life.
Adult organ donor numbers have doubled from about 800 in 2007-8 to 1,600 last year.
Better publicity about donation is credited for the rise. But child donors have remained static, with fewer than 60 each year.
The number of youngsters waiting for organs has risen in 2019. One hundred are on the list for a kidney, up from 92 in 2018, and 38 need a heart, compared with 34 last year. Of those waiting for hearts, six are babies under two, 19 are two to nine-year-olds and 13 are aged 10 to 17.
It is particularly difficult to find hearts for young children as they need to be matched for size. A young donor is their only hope.
Liz Armstrong, head of transplant development at NHS Blood and Transplant, said: “As we approach Christmas, we have 185 children waiting for a transplant.
“Our figures show that children who need an urgent heart transplant will wait on average two-and-a-half times as long as adults. For many, that wait is sadly too long. They will die before they receive the transplant they so desperately need.
“By saying yes to organ donation, families are in a position to give another family hope.
“Donor families tell us they take great pride and comfort from the knowledge that they have helped to save the life or lives of others.”
NHS Blood and Transplant figures show there are currently 6,001 adults on the transplant list.
The average waiting time on the urgent heart transplant list for adults is 30 days. However, for children it is 79 days.
Over the past 15 years, 142 children have died while waiting for a donor organ.
CASE 1: A cousin’s kidney for Chloe
Cancer survivor Chloe Smith is looking forward to her first proper Christmas – after receiving a kidney from a family member.
The youngster, now four, was diagnosed with tumours on both kidneys when she was a year old. Her organs were removed and she was put on dialysis. She also needed chemotherapy.
Mother Laura Peart, 38, said: “During chemotherapy Chloe lost her hair, she had no energy. She struggled to walk. The dialysis was also putting such a strain on her and her heart which was failing.
“We had hit every hurdle. It was so dark.”
Laura, a former British Gas manager and mother of two from Langley, Berks, and her partner were not a blood and tissue match – but Laura’s cousin Maria Sayer, 36, was. Her kidney was removed in April and transplanted to Chloe.
Since then Chloe has been transformed. Laura said: “She’s now like a normal four-year-old, running around. We have not had a proper Christmas because she has been on dialysis and so ill. This one is going to be amazing.”
Laura is full of gratitude to Maria. She said: “By giving Chloe a kidney my cousin saved her life, her heart – and it mended my heart which had been broken for three years.”
CASE 2: Anna is holding on to hope
Teenager Anna Hadley may never get to university – unless she gets a new heart.
Two years ago the 14-year-old was diagnosed with restrictive cardiomyopathy after collapsing twice at school during PE.
Her condition means she will die without a transplant. Father Andy Hadley said: “Her life will be short. We know she will be lucky to finish school. She may never get to university.
“She was very sporty. She played football, was in the county hockey team, but after her diagnosis we said that had to stop.
“This has destroyed Anna from a personal and social point of view. She does not pity herself, but asks, ‘What can I do next?’
“For us it is about trying to hold on to hope. Every day despair brings you to tears, but as long as you can kick it out and carry on, you can grab on to hope again.”
Andy, a 49-year-old vehicle parts salesman from Nunnery Wood, Worcs, added: “Children of seven or eight have an understanding of death in childish ways.
“Parents should explain that things do happen and – you never want them to die – but if it happens they have the chance to be a hero and donate. Don’t waste that chance.”
COMMENT BY Angie Scales
Right now across the UK the parents of 185 children are waiting for a call that means normal life can begin for their families.
Waiting for an organ transplant can be incredibly difficult for young patients, their parents, siblings, grandparents, everyone who loves them. Only a transplant means an end to illnesses that affect their development.
Christmas is a joyous and happy time generally but the anguish of families waiting for a transplant for their child never goes away, even at this time of year.
This Christmas, some will be in hospital for the whole of the festivities – not able to decorate their tree, wake up at home to open presents or eat Christmas dinner with their loved ones.
Of the children waiting, 38 desperately need a heart transplant and six of those are under two years old.
Sadly, some will die before that gift becomes available. So it’s really important to have the conversation about organ donation – including with your children.
Child death is thankfully rare, but when it does occur organ donation and the resulting transplants can be a huge source of comfort.
Although the law governing organ donation will change in 2020, it will not apply to children.
Knowing what family members would like makes a decision much easier. Please have the conversation today – it can save lives.
• Angie is a Child specialist nurse
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