A BABY boy with a life-threatening heart condition is continuing to defy the odds.
Harry Lee from Southam was diagnosed with heart problems two days after Christmas in 2017. He was just a month-old when he suddenly turned blue and was rushed to hospital.
It turned out the newborn had a rare heart disease called Shone’s Complex and parents Shane and Hayley were told he may not live to see another day.
Harry underwent two heart surgeries but neither were a success and Shane admitted they had ‘prepared for the worst’.
He said: “We’d ended 2017 enjoying our very first Christmas as a family but we were starting 2018 knowing that we could be torn apart within days. But Harry’s a fighter, and made it through that weekend.”
Family life was turned upside down as the pair travelled between Great Ormond Street Hospital (GOSH), Birmingham Children’s Hospital and their Warwickshire home where one of them would care for their other son Riley.
Harry survived more open heart surgery usually restricted to children over ten.
Shane said: “Harry had been born just a few months earlier. We knew that if he didn’t have the surgery, he might not make it. But if he did go into theatre, there was a chance he’d never come out. We had to take the risk. Time passed so slowly while Harry was in theatre. But he defied the ten per cent survival odds.”
However more devastation followed after doctors realised Harry’s heart was enlarged, causing him breathing difficulties, meaning he needed more specialist treatment.
Shane gave up his job as a builder to look after and ‘provide some stability and normality’ for three-year-old Riley.
The pair were forced to put their wedding on hold and barely saw each other as they split their time between the children.
The family was finally united nine months later but their joy was short-lived. Just 40 hours later, Harry stopped breathing and was once again rushed to hospital, where they found a recently-fitted stent was not working. Harry had a different type of stent fitted, but was among the one per cent of those whose body rejected it.
Harry, who is now one-year-old, was forced to use a ventilation machine for sometime until he only needed breathing support at night.
Sadly Harry and his family spent the festive season in Birmingham Children’s Hospital where he continues to be treated and operated on.
And now his dad is urging people to donate to the Birmingham Children’s Hospital.
He said: “The staff have been fantastic and even supplied presents for both Harry and Riley over Christmas. We want to be able to help others like Harry and families who have gone through what we have gone through. We also want to raise the profile of Shone’s Complex and the devastating effect it can have on people’s lives.”
Visit www.bch.org.uk to donate to Birmingham Children’s Hospital and www.pted.org/?id=shones1 to find out more about Shone’s Complex.
