Plea to unite family of baby born with a rare heart defect

Baby Noah with parents Stuart and Rebecca
Baby Noah with parents Stuart and Rebecca

Dunmurry couple Stuart and Rebecca Curran discovered their new baby was suffering from a rare condition called hypoplastic left heart syndrome (HLHS) during a 20 week scan.

Baby Noah, who was born on October 2 at the Royal Victoria Hospital in Belfast weighing seven pounds four ounces, urgently required surgery for the serious defect that affects normal blood flow through the heart.

The condition means that the left side of the vital organ has not formed correctly, and therefore cannot pump oxygen-rich blood around the body properly. Instead, the right side of the heart must pump blood to the lungs and to the rest of the body. Surgery is needed to prevent closure of the connection between the right and left sides.

About one in every four babies born with a heart defect has a critical congenital heart defect - making the condition relatively rare.

Without surgery, hypoplastic left heart syndrome is fatal. With treatment, around 85 per cent of babies survive, although most will have complications later in life.

Baby Noah was quickly transferred to Birmingham Children’s Hospital for open heart surgery on October 6 and has remained there for the past five weeks with parents Stuart and Rebecca waiting anxiously at his bedside.

“It’s a rare condition requiring a very complex operation,” explained dad Stuart, 29. “The operation could not be performed here so we were told that we had to go to England. Two days after Noah was born in the Royal in Belfast he was transferred by air ambulance to Birmingham. My wife and I were extremely worried. There was an 85 per cent chance that Noah would survive but we were still very concerned. He had open heart surgery for six hours.”

Mum Rebecca, 26, said: “I was induced at 39 weeks and even though we knew Noah had this condition it was still extremely worrying when he arrived. They let me carry him down to the theatre for his surgery. After the operation he had all these medicines, and machines attached to him, and it was extremely scary, but the surgery went really well. Basically they had to insert shunts to make a connection between the right and left ventricles of the heart so that the blood could flow properly. That increases the oxygenated blood going through his system. We were told that in Northern Ireland there are only around six babies per year born with this condition.

“We have just been told that Noah has to have more surgery to correct what is known as bilateral vocal cord paralysis. This is a problem with his vocal chords being too close together and is a side effect of the operation he underwent.”

Because of his condition Noah still has not been able to meet his siblings, Lily Grace (6) and four-year-old Mia Rose, who are back in Belfast.

The couple have been told they may not get home in time for Christmas and have set up a Just Giving page to try to raise funds so that Noah’s sisters can travel to Birmingham to meet him in time for the festive season.

“It would mean so much for us to be together as a family for Christmas,” adds Rebecca. “Mia Rose has been singing down the phone to Noah and Lily Grace is learning the guitar and she plays whatever she has learnt that day for him. We don’t know when we will get home, it depends on how Noah responds to his next surgery.”

To donate visit www.justgiving.com/crowdfunding/stuart-curran-1.