BC moms Kim and Kristin, from North Vancouver and Nanaimo respectively, speak with enormous pride, love and amazement when they talk about their sons, Blaise and Judah.
This is because both boys have been patients at BC Children’s Hospital since before they were born, and both have survived diagnoses of congenital heart disease through the Fetal Heart Program at the Children’s Heart Centre.
The Fetal Heart Program provides care to BC kids and families facing congenital heart disease diagnosed before birth using a multidisciplinary team that includes pediatric cardiologists, perinatologists, geneticists, nurses and counselors. BC Children’s specialists perform fetal echocardiograms, allowing them to identify abnormalities early in pregnancy.
The heart is one of the first organs to form in a developing baby or fetus, and is completely formed by the eighth week of pregnancy. Although the heartbeat is detectable by six weeks, details about the structure and function of the heart can only be determined much later in pregnancy – and sometimes only after birth.
Kim was 18 weeks pregnant with Blaise when she and her husband Nico were referred to BC Children’s. Their baby was diagnosed with transposition of the great arteries – a serious but rare heart defect in which the two major arteries leaving the heart are reversed and need to be switched back surgically. This transposition changes the way blood circulates, leaving a shortage of oxygen in blood flowing from the heart to the rest of the body.
“It was a very emotional and stressful day,” remembers Kim. “But the staff at Children’s explained everything to us. We were so worried about the outcome, but everyone was very reassuring, from Dr Gandhi explaining the surgery to Jan Rooks supporting us and answering our questions.”
Kim and Nico continued to visit BC Children’s once a month for follow up appointments, during which time Jan connected them with other families who had experienced or were experiencing the same diagnosis.
“There was a lot of anticipation and stress during the pregnancy, but getting to know other families through Jan in the Fetal Heart Program helped us through,” says Kim.
When Blaise was born on January 19, 2013 he was sent directly to the PICU. He underwent an arterial switch operation at five days old, and was discharged home at ten days. He had a blood clot in his leg that required treatment – injections done by his parents twice a day – for a month after surgery, but since then he has been thriving.
“Blaise is now two years old,” says Kim, “and we’ve been told by the Children’s Heart Centre and Dr Shu Sanatani, who played a huge role in Blaise's recovery, to ‘come back in a year.’ It really is amazing how much Blaise has gone through, and I can’t put into words how much the staff at Children’s have supported us throughout this journey.”
Kristin is from Vancouver Island and was referred to Victoria General after a routine ultrasound at 20 weeks. One of her baby’s heart ventricles looked small, and after a fetal echocardiogram, he was diagnosed with a double inlet left ventricle – a condition in which only one of the heart’s two lower pumping chambers (ventricles) is developed enough to function adequately. The treatment for double inlet left ventricle requires a series of cardiac surgeries to re-route the circulation in his tiny heart and lungs.
Kristin came to BC Women’s Hospital to deliver Judah and met with staff in the Fetal Heart Program.
“Everyone was incredibly supportive,” she says. “Jan Rooks was a huge comfort to me and our family, always getting back to us when we had questions and helping us understand the diagnosis. I remember after the very first chat I had with her, it was the first night I could actually sleep.”
Judah was born on June 17, 2014, and had his first surgery called the Norwood when he was only 36 hours old. He had his second surgery, the Glenn operation, at four months old, and is now waiting for his third – and hopefully final – surgery to complete his treatment. And while waiting, he’s growing. Kristin beams with happiness at how much Judah has endured.
“He’s truly thriving – he’s growing, he’s alert.”
BC Children’s Hospital celebrates all the kids and families who have faced heart conditions. The Children’s Heart Centre will continue to follow Blaise and Judah as they get older – providing support every step of the way.