THE family of a miracle baby given four weeks to live have told how he continues to defy the odds – almost two years later.
Matthew Begley, from Gorey in Co Wexford, was diagnosed with multiple serious heart conditions before he was born and spent his first days of life in Crumlin Hospital’s ICU.
At just 20 weeks, he suffered from a rare genetic condition called JAG 1 gene mutation, Alagille syndrome, pulmonary atresia, and MAPCAs which affect his heart.
And at only ten days old, doctors confirmed the worst for the tragic tot’s parents – he was born without a critical pulmonary heart artery. Matthew was given four weeks to live.
Mum Eilish said: “It was an overwhelming amount of information to process, but one thing we knew for certain – we wanted to bring Matthew home.
“We wanted him in his cot, in our bedroom, in our home, surrounded by love. We also wanted his big brother Patrick to meet him properly.”
And the timing of Matthew’s journey home after his diagnosis was made all the more tragic as his brother Patrick’s playschool graduation was that same night.
Eilish said: “We wanted a family photo of the four of us. We didn’t know if we’d ever get another chance to celebrate a family occasion together.”
Eilish and John received support from children’s charity Jack and Jill, a Gorey-based organisation that helps give parents a break from care at home.
The charity was founded in 1997 by Jonathan Irwin and Mary Ann O’Brien in memory of their son Jack who lived at home for 22 months before tragically passing away.
Eilish said: “Our Liaison Nurse Manager, Joanne Doyle, did absolutely everything to make it happen along with the help of the interdisciplinary community team.
“Without Jack and Jill’s support out of hours that weekend, we wouldn’t have been able to bring Matthew home.”
The family added that, 21 months on, Matthew is a thriving baby, despite his sickness and need for constant care.
He is now able to play with toys and do jigsaws, with his parents explaining that he loves to go to the park whenever it can be managed.
BIRTHDAY CELEBRATIONS
Eilish explained: “We know that every moment with Matthew is precious, so we celebrate his birthday on the 8th of every month.
“We have a cake and do something special as a family. With an uncertain future, we make the most of every day and every milestone.
“By last April, I was struggling to manage everything. John was back working in Dublin, and I was trying to balance Matthew’s 24-hour care regime with making sure Patrick got the attention he needed and deserves too.
RESPITE SUPPORT
“That’s when we started using the respite support provided by Jack and Jill with regular nursing hours.
“We have a team of wonderful experienced paediatric nurses to care for Matthew at home.”
- The charity’s Incognito gallery sale at Unit 5 in Charlemont Square will be held on April 11 and 12, with an online sale to be held on April 16 – each postcard-sized artwork costs €70.
