Shortly after she was born, Samaa needed life-saving surgery for a rare congenital heart condition known as total anomalous pulmonary venous return (TAPVR). Her dad shares their story.

Samaa was born with TAPVR, a condition where oxygenated blood returns from the lungs to the right side of the heart instead of the left. What’s more, her blood vessels were twisted at the point of connection, meaning blood was obstructed from reaching her heart. Without an operation, her condition was fatal.

“One of your biggest worries as a parent is catching your child’s problem early enough. Once we arrived at GOSH, we knew we had,” said Samaa’s dad.

Heart surgery

Consultant Cardiothoracic Surgeon Dr Tain-Yen Hsia explained that they would need to lower Samaa’s core body temperature to a chilling 18 degrees centigrade. They would then turn off the bypass machine to stop the heart and blood flow while they worked, giving them a 45-minute window to repair her blood vessels before Samaa risked permanent brain damage.

“I’ll always remember taking Samaa to be given her anaesthetic,” said her dad. “As I put her down on the table, she looked up and gave me a little smile. That was the last thing she did for us before the operation – smile.”

Dr Tain-Yen Hsia, who performed the procedure on Samaa, explains: “No matter how complex the procedure, it’s a real privilege to be able to offer our patients and their families the chance of a good quality of life.”

Samaa's first birthday

The road to recovery

Samaa spent another 10 days at GOSH. Luckily her dad was able to stay locally, but juggling care for their elder child did prove a challenge. “GOSH provides an amazing service for people in our position. The staff really did take care of us like we were part of a family – we developed a really special bond.”

Within a month of being home, Samaa was growing and behaving like any other baby. “She’s absolutely perfect in every way,” her dad says. “Don’t get me wrong – she and her sister can run riot at times, but just having her at home and seeing her smile makes us so happy every day.”

Ongoing care

It is likely Samaa will need monitoring for the rest of her life. “We know she’s in the best place possible,” said her dad. “We went through absolute turmoil, but we’ll never forget the way people looked after us.”

Find out about the plans for a cardiac research unit in the upcoming redevelopment project, the Centre for Research into Rare Disease in Children.