One in every hundred children will be impacted by a congenital heart defect. These can range in complexity from a subtle murmur to more severe conditions that require open heart surgery on these small fragile patients.
Not everyone wears their heart on their sleeves, but not everyone is Cora Millar.
“She's funny, she's curious, she's a very smart, vibrant 3-year-old,” said Cora’s dad Anthony Millar.
On the outside, she's a typical toddler, but on the inside, things are a little different.
“Early on we found out with our prenatal screenings and then we were referred to the pediatric cardiology clinics with Dr. Sami. And that's when he did a confirmatory echo to show that Cora's heart was a little special,” said Millar.
"Cora has a condition we call hypoplastic left heart syndrome. It simply means that the left heart structure is underdeveloped,” said Sami Awadallah, MD, a pediatric cardiologist with Avera Health.
Meaning Cora's special little heart needs to work a lot harder to keep the blood and oxygen pumping through her body.
“She has a little blue tint to her and they like to tell us that she will be a little winded with activity or have to work a little harder. But looking at her, you wouldn't know that she has half a heart only working. It's been a learning process. Cora was our first child and we were parents for the first time with her. So it's been a learning curve,” said Millar.
Detecting Abnormalities With Echocardiology
Her short life has been full of learning curves. Two open heart surgeries and a third looming. In the meantime, Cora gets careful observation and routine echocardiograms from her pediatric cardiology team.
“We need to see how it evolves over time. Are things stable? Are things getting better? Are things getting worse? Echocardiography is non-invasive. It's not painful. It just involves some ultrasound gel on the chest and looking at the heart from different angles, maybe half an hour or so. So it's relatively painless for most patients, although again some little toddlers, for example, might not be very happy with it,” said Aaron Clem, MD, a pediatric cardiologist with Avera Health.
Being in a dark room filled with strange noises can be jarring. That's why the Millars started A Cure for Cora, an organization to quite literally shine a light on CHD and help take some of the fear out of those appointments.
“To try to help a child lie still for a while. We thought there could be improvements. So we helped by adding lights and providing books to hopefully distract and make the experience a little better for the children and for the families too,” said Millar.
What the Millar parents have done for our clinic and our patients is quite phenomenal,” said Dr Awadallah.
“It's amazing. I mean, it's such a selfless act to have a child with hypoplastic left heart syndrome or other severe congenital heart defects. It's huge. I mean, it's a huge stress, a lifelong commitment. And to not only handle that, but also want to give back and help out others, I think just shows… it’s just really amazing,” said Dr. Clem.
Living and Thriving with CHD
Cora is definitely unique, but her condition unfortunately is not. An estimated one in 4,000 babies are born with hypoplastic left heart syndrome and will need lifelong care and observation from pediatric specialists.
“You know, there's a lot of big, bad and scary that comes with a diagnosis like that. And especially if you Google, being a first time parent and wondering what life can look like, but CHD is complex. CHD can look like this. We've been very fortunate and blessed at how well she's done. And we couldn't be more fortunate for the care team that's helped her come all this way,” said Millar.
She's already come such a long way in her three short years. And despite her heart being physically half of what it should be, Cora continues to embrace every task wholeheartedly.
“She loves life and she's our hero,” said Millar.
There is no cure for congenital heart defects, but through treatment and surgery doctors can significantly improve quality of life and reduce the severity of symptoms.
Learn more about pediatric cardiology services and resources for families
