By the time he was nine days old, Wellington newborn Frank Bramwell-Stevens had undergone two heart procedures, including surgery. They saved his life. He was born with a rare congenital heart defect called “transposition of the great arteries”, where the aorta and pulmonary artery are switched around.
The condition was first picked up by the routine antenatal scan his mother, nursing student Emma, had at 20 weeks’ pregnancy. She remembers being upset when sonographers – at a radiography chain – told the couple of the possible diagnosis. But after that, the care the family received from their midwife, Wellington Hospital’s maternal fetal medicine unit, and the team at Starship Child Health was fantastic, Emma says.
Subsequent tests confirmed the diagnosis and Emma was closely monitored until she reached 37 weeks, when the family flew to Auckland and were put up in Ronald McDonald House. (The DHB paid for Emma and husband Danny Steven’s flights, and the couple paid for their two-year-old daughter, Marlene, to come too.)
“If was fairly disruptive with all the logistics of relocating, but we were lucky that Danny’s work was really understanding and he was able to work from Auckland, and I’d just finished my semester.”
Baby Frank was born August 20, just after his due date. “He came out shouting and he hasn’t stopped since!” Emma laughs. “He looked so much better than I was expecting. The majority of his body wasn’t getting oxygenated blood so I thought he would be blue, but he had good colour and was a good size.”
Three hours after birth he had his first surgery – a balloon atrial septostomy, in which doctors widened the hole between his atria (the two heart chambers that blood enters) to allow more oxygenated blood to flow into the body.
“The next day, he came off the ventilator and we were able to have cuddles and start breast-feeding.”
A week later he had the main surgery in which doctors switched the arteries. “It was pretty stressful,” Emma says. “We tried to distract ourselves, took the ferry to Devonport with our daughter and had some lunch. He’d gone in at 8.30am, and we were so relieved when we got the call from the surgeon at 2.30pm to say it went well.”
After a brief return to the operating theatre to fix a bleed, the family visited him.
“He had his chest open with all these tubes coming out of it, covered with clingfilm. They’d left it open in case of swelling. That was quite confronting. They operated on him again the next day to close it.”
Frank was discharged a week after the main surgery – “we flew through recovery” – and is now a healthy six-week-old. “He’s doing incredibly well and you’d never know from looking at him that he’d been through all that,” says Emma. “He’s just got this wonderful scar which will make for a great story!”
Emma says she was surprised to learn that fewer than half of the babies with congenital heart disease are diagnosed before birth. “Having that antenatal diagnosis meant we were able to be prepared and organised, and had time to process the news; rather than giving birth and then getting the diagnosis and having all that information coming at you – I can’t imagine what that would be like.
“People often ask us, ‘how did you cope?’. Having that antenatal diagnosis was a big part of it. You have time to ask questions, do your own research, and make all the arrangements. You learn that the treatment is bread-and-butter for Starship, and you have time to speak to organisations like Heart Kids, which have been an amazing support for us.
“In our experience, it all felt very organised and in-hand. It makes me really sad to think that some families don’t get that, and to think what the potential outcomes might have been for Frank had he not been diagnosed antenatally.”