Mother and kids navigate life with congenital heart disease

Yahoo

20-02-2025

GRAND RAPIDS, Mich. (WOOD) — Anyone with four kids usually has their hands full and Roseli Quakkelaar is no exception. But on top of the usual school and extracurricular schedules, she's also navigating the health system.
'I was actually adopted from Brazil at the age of 3. My adoptive parents knew when they got me that I had health issues,' Quakkelaar told News 8. 'When I was brought here to America, they did all the testing and realized that I had a congenital heart issue.'
When Quakkelaar was 5 years old, she had open heart surgery to repair a ventricular septal defect, or VSD, which is a hole in the heart.
'When I started having children, I guess I didn't really realize that it could be passed on,' Quakkelaar explained.
Her oldest, Everett, was born with a healthy heart. A week before her next child, Keagan, was born, she found out he also had congenital heart disease. Keagan had an atrioventricular septal defect — two holes in his heart. The defect was corrected with open heart surgery when Keagan was 6 months old.
Quakkelaar's third child was also heart healthy. Then her youngest, Natalie, came along.
'Natalie had a lot going on, so we did a lot of testing and early on in the pregnancy, I was realizing that we were going to be dealing with heart issues as well,' Quakkelaar said.
Natalie had chromosomal abnormalities and a complete VSD. She underwent open chest surgery when she was 4 weeks old and open heart surgery when she was 5 months old.
'We always say my kids liked to one-up me because they decided to have two holes in their heart instead of just one small hole,' Quakkelaar laughed.
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She can joke about it now, but going through this with not one but two kids was far from easy.
'It was incredibly difficult. Emotionally, you struggle with, is this the right decision? What time is the right time to do it?' Quakkelaar reflected.
She added that she's grateful for the team at Corewell Health Helen DeVos Children's Hospital in Grand Rapids for helping her navigate these decisions.
Doctors with Corewell Health say congenital heart disease impacts 1% of births across the U.S. Though it seems like a small amount, it's the most common birth defect in the country, affecting roughly 40,000 babies each year.
'Life expectancy has gone dramatically upwards,' said Dr. Sarah Fahnhorst, an adult congenital heart disease cardiologist. 'Thinking kind of at my own personal practice, I generally care for individuals between the ages of 16, 18 all the way up to 84, so it spans the whole lifetime and people are living longer and longer.'
Despite the Quakkelaars' situation, Fahnhorst said the majority of CHD cases are not genetic. When they are, they are called syndromic congenital heart diseases.
Though she wouldn't have changed a thing, Quakkelaar said she wishes she had gotten genetic testing done so she could feel more prepared knowing what to expect.
Corewell Health offers such testing as part of preconception counseling. Fahnhorst believes it's important for parents to be aware of all the outcomes.
'I very rarely will say, 'No, you cannot ever have children,' but we're all part of a team, and I want them to be as well informed as possible going into pregnancy,' she said. 'We talk about the risk of having a small baby or having a baby preterm, and those are kind of risks for baby, and then risks for mom would include things like heart failure or abnormal heart rhythms and sometimes even blood clots during pregnancy.'
Despite the risks, Fahnhorst said many people with congenital heart defects are choosing to have children, with quickly growing support both professionally and communally.
'There are so many different Facebook or social media groups where people can meet other people who have hearts like them, which just really shows that people are becoming engaged. As you start the conversation with someone, usually you run into a person who knows someone who has congenital heart disease,' Fahnhorst said.
Every disease is a little bit different, she added. While some people might not have any limitations, others might have advanced heart failure.
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Quakkelaar is grateful for her kids' outcomes. Keagan plays soccer and Natalie gets cleared by her doctor regularly. Their mother has also learned how to be a strong advocate and encourages other parents to do the same.
'These children can't speak for themselves, so we as parents have to speak on their behalf and give them their voice,' Quakkelaar urged. 'And sharing your experience because people aren't going to know what you went through unless you share it.'
Quakkelaar and her two kids are in what they call the 'zipper club' because they all have scars from open heart surgery.
'Sometimes I think that the cardiac problems we have has kind of bonded us, because (Keagan) had such a good relationship with Natalie immediately, and I could see the compassion in his heart for her and it just kind of all stemmed together,' she said.
She hopes to use her experience to help others. Despite having four kids, she's somehow managing to squeeze in full-time schooling at Grand Valley State University to become a cardiac intensive care unit nurse. She hopes to work at Helen DeVos.
'I really just have a passion for children, have a passion for the cardiac unit and now I kind of feel like I have a little bit of both of the sides as a mom and learning a lot about the medical aspect, and the ethics and all of the different things,' Quakkelaar said. 'It was definitely a hard journey, but it's put me on a right path.'
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