Lindsey and Oliver Nam had hoped to hold a special celebration to mark their daughter Ella’s 100th day of life – a tradition in some Asian cultures to commemorate an important milestone for a family.
But a big celebration with friends and family would need to wait.
Shortly after birth, Ella was diagnosed with coarctation of the aorta, a congenital heart defect. While the family awaited next steps, they couldn’t risk her being in a large crowd and getting sick.
“It was hard,” Lindsey says. “That’s the scariest thing to think about. You just brought them into the world and now something is wrong.”
The journey begins
Tests conducted just after Ella’s birth in December 2017 first revealed a heart murmur, an unusual sound made by blood circulating through the heart’s chambers or valves, or through blood vessels near the heart.
After two extra days in the hospital, Ella had progressed nicely and the new family of three headed home. On the horizon were follow-up medical appointments to determine whether Ella’s murmur was harmless or caused by an underlying heart condition.
At home, Ella was gaining weight, doing well and reaching milestones – so when a pediatric cardiologist made his diagnosis, her parents were surprised.
Coarctation of the aorta means that a large artery in Ella’s heart that carries oxygen-rich blood from the left ventricle to the body was too narrow. This can restrict the amount of blood that could travel to the lower part of Ella’s body.
If the condition went untreated or the aorta didn’t widen on its own, Ella’s heart would need to work harder and harder to pump blood, leading to a possibility of pediatric stroke or heart failure.
But because Ella was healthy and doing well, the family considered alternate timelines for treatment and sought second opinions.
A big decision
When Ella was about 7 months old, though, surgery became a reality. After more tests, experts at the CHOC Heart Institute recommended Ella undergo pediatric heart surgery to correct the problem as soon as possible.
“It was hard to hear,” Lindsey says. “That’s when we started to get worried.”
Dr. Richard Gates, a pediatric heart surgeon and co-medical director of the Heart Institute, would perform the procedure. By working through Ella’s back, near her shoulder blade, he would widen the narrow artery.
Heading into surgery day, Lindsey and Oliver were frightened, but maintained a brave face for their daughter.
“Going into it and preparing for it, I was strong,” Lindsey said. “I didn’t want her to think anything was wrong.”
The procedure went well, but Lindsey’s strong façade crumbled when she saw Ella afterward.
“The worst part was when I saw her after the surgery,” she says. “Everything was fine but seeing her sedated and with all these tubes in her – oh, my goodness. It was a lot to handle. I broke down.”
Ella was in great hands at CHOC’s cardiovascular intensive care unit, where she spent five days recovering after surgery. By the fourth day, Ella was able to keep down milk and even ventured outside for a wagon ride. On the fifth day, the family of three headed home.
“It’s the best feeling ever,” Lindsey said.
Several months after surgery, Ella has had some follow-up visits and there remains a chance that she may need surgery again someday.
For now, though, she is healthy and right on track developmentally. Ella is crawling and pulling herself up on furniture, with first steps nearly within reach.
Rather than worry about the future, the Nams are mindful to focus on Ella’s happiness and health – and they’d offer the same advice to another family contending with a heart defect.
“I would just say remain calm and just take it one day at a time,” Lindsey says. “Also, do your research and try to get second and third opinions.”
Time to celebrate
The family has also been making up for some lost opportunities. In lieu of the big 100th day celebration the Nams never got to host, they went big when it came to commemorating Ella’s first birthday a few months ago.
After all, they had so much to celebrate.
“She’s accomplished so much,” Lindsey says.
Learn more about CHOC’s Heart Institute
At CHOC, our highly specialized and board-certified pediatric cardiology team and cardiothoracic surgeons provide patients and families with advanced cardiac services.