A COURAGEOUS young boy on the waiting list for a transplant has placed “a shiny new heart” at the top of his Christmas list.
While most kids are dreaming of toys, Jamie Higgins from Bishopstown has asked Santa Claus for a new heart.
The eight-year-old's touching Christmas letter was penned after news he had qualified for the transplant list back in November.
“Jamie asked me if his new heart will be shiny like Iron Man’s as he’s a big fan of Marvel superheroes,” his mum Deborah said.
“When I told him it would be he was very excited. He loves Avengers and thinks he’s going to be Iron Man when he grows up.”
Jamie was diagnosed with hypoplastic left heart syndrome (a birth defect affecting normal blood flow through the heart) at just two days old.
“The doctor came in to check his oxygen levels,” Deborah recalled.
“That was when he realised something wasn’t quite right. Jamie was rushed to Crumlin and spent time in ICU.
"We had been given the choice of opting for heart surgeries or palliative care. We opted for the surgeries because that was the right thing for us.
"When he was eight days old he had his first open-heart surgery and stayed in hospital for four weeks. We were able to take him home two days before Christmas.
“In April 2012 it was thought that Jamie would be in hospital for 10 days after his operation. He ended up staying in hospital for five months.
"For four months of that time, he was on a ventilator. He was in isolation for the last month.”
It was initially thought he would undergo three surgeries.
However, after his second operation Jamie’s mother Deborah was devastated to learn he would need a heart transplant sooner than expected.
“We were told that a third surgery would do him more harm than good,” she said. “Before we were facing the possibility that he would need a transplant in his mid-to-late teens. Now, we realised it would be a lot sooner.
"The team in Crumlin felt it would be in our best interests to go to the Freeman Hospital in Newcastle and get him assessed over there to see if he would be a suitable candidate for a transplant.
"When something like this happens you go into a bubble. However, I made it my mission to do as much as possible to make life fun and exciting for him and Kayleigh.”
The little boy travelled with his family to Newcastle last August.
“The assessments were very thorough and included blood work, tissue typing and an x-ray on the lungs to assess how strong they were. The pressure in the lungs is affected by the heart so this was a necessary part of the examinations.
"There was also a meeting between the cardiac team to discuss what the best option should be for each child.”
What followed was an anxious waiting game for the family.
“It was a long wait between August and November to see if he was suitable. I kept wondering when the letter might come and what the outcome would be.
"The letter saying that he had qualified for the list arrived on November 18, just two days before his birthday.
"A phone call had come through before that but you never really believe it until you see it in writing. Our 2019 didn’t really begin until we heard that news. It ticked off our birthday celebrations really nicely.”
This will be an extra special Christmas for the family.
“This year I’ve decided to make the most of Christmas. I’m going to buy the extra toy and celebrate as much as possible because who knows where we’re going to be next year?” Deborah said.
Jamie had expressed his Christmas wish for a new heart to his little sister Kayleigh.
“His three-year-old sister Kayleigh told me that Jamie would be getting a shiny new heart.
"I wondered how she could have known.
"Then I realised that Jamie had been bragging to her about how he was going to hospital to get a new heart. He hadn’t told anyone in his school about it as he was too shy. Instead, he had been telling his sister while nobody else was listening.”
Jamie always remains upbeat in spite of his illness.
“People forget that when they’re looking at Jamie. You would never believe that he only had half a heart.
"He won’t go anywhere without his teddies. They’re part of his clique. Playdates are risky as he can’t pick up infections so we have to be careful.
"This is the case even for family members. He’s great craic and always loves to be the centre of attention.”
The Cork boy is now serving as an inspiration to other children with heart defects after appearing in the 2020 Heart Children Ireland Calendar, a charity supporting children with congenital heart defects and their families.
“When I saw they were looking for children on Facebook I knew we had nothing to lose. Hearing he had been chosen was such a big lift for us. His picture was taken for the March part of the calendar. He was photographed with his Spiderman teddy. The whole thing was a lovely distraction for us.”
Deborah’s wish for the new year is a simple one.
“My biggest wish for 2020 is that Jamie’s health doesn’t decline and we can enjoy life as best we can.”
The mum of two extended her gratitude to everyone who has supported them through their journey.
“I would just like to say how thankful we are to the staff of both Crumlin Childrens’ Hospital and Cork University Hospital. Heart Children Ireland has also been amazing and the work and services they provide are of great help to families like ours. We appreciate it all so much.”
To find out more about Heart Children Ireland readers can log on to their Facebook page at https://www.facebook.com/pg/heartchildrenireland/about/