The Importance of Parents Sharing CHD Research and Advocating for Their Children

Advancement in standards of care and best practices can only happen with research. This week, Margaret King discusses the implications increased CHD research has on not only the community but society as a whole, as well as how important it is for each one of us to contact our representatives to increase research funding. 

The Promise of Research for CHD, and Our Responsibility to Advocate

This past month, I and a group of several other local heart families were treated to an astonishing behind-the-scenes tour of the Mitchells’ research lab at Children’s Hospital of Wisconsin, where we learned about the vital work they are doing to identify the genetic processes, risks and factors in CHD. Just a few weeks prior, I also had the opportunity to attend Mayo Clinic’s Feel the Beat event, where the HLHS Program shares research updates with heart families. Both of these research programs are committed to improving treatment of CHDs across the lifespan, with the further goal of exploring targeted treatments based on individual risk factors. Many leading pediatric cardiology centers are working tirelessly behind the scenes to make game-changing breakthroughs for current and future CHD patients. From stem cells to genetics, new medical devices and drug therapies and of course, developing best practices for everyday care and management, research underlies almost all aspects of CHD care. It has enormous implications for the quality of life and outcomes CHD patients will experience. As members of the CHD community, we can advocate for lifesaving research funding to our representatives, as well as urge our friends, families, neighbors and colleagues to do the same.

Research Breakthroughs: A Ripple Effect

With one in 100 babies being born with a heart defect, there is an urgent need for research breakthroughs in preventing and optimally treating CHD of all kinds. However, studying individual types of CHDs can have tremendous implications that extend far beyond CHDs themselves. For example, understanding the possible cascade of genetic events that causes hypoplastic left heart syndrome (HLHS) sheds light on the broader process of cascades that cause a number of complex diseases, many of which have stumped researchers for decades. If we can offer anything from targeted stem cell therapy to genetically-tailored drugs for one disease, it is just a matter of time until these technologies can be used to treat a wider and wider range of illnesses. These cutting-edge research discoveries have great potential to alleviate suffering, not just in the CHD community, but across entire our society. They offer hope that we truly can “conquer CHD” and many other conditions that have proved to be extremely challenging to treat and manage using the life-saving advancements of the 20th century. While the breakthroughs of the past were revolutionary, we now know we can do so much more if we put resources into the proper channels.

Advocating for Research: Our Responsibility

Researchers and doctors cannot shoulder the burden of advocating for research alone. The more we help advocate, the more time they can spend on research and collaboration. As it is, researchers often spend a lot of time identifying avenues of funding and writing grant applications for scarce funds, which takes valuable time from their work in the lab. Many of us understand the importance of advocating to our political representatives, but do we talk to our friends, families, neighbors and colleagues about how important it is to fund public research through institutions like the National Institute of Health (NIH)? The NIH is the largest source of biomedical research funding in the entire world, but the process is fiercely competitive, with less than 20 percent of applications being approved at any level of funding. The number of projects the NIH can fund, as well as what level of funding projects receive, fluctuates with the national budget. Advocating not only for increased funding, but stability in the NIH budget from year to year, is of utmost importance to make sure the lights stay on in some of our most promising, dedicated labs. After all, when the lights stay on at the lab, researchers can shed light on life-and-death health problems that affect many of us personally, and all of us as a society. Research takes an enormous amount of time, especially when dealing with pediatric populations and small pools of patients. Simply gaining approval for a clinical study is a complicated process, because researchers have to demonstrate their studies will not cause foreseeable harm to their subjects. With today’s advanced technologies, the studies we need in key areas like genetics and stem cell research are expensive, and can even face ethical and political hurdles. Many of them have several phases, each taking years to complete. When scientific and medical studies of repute are finally completed, they must undergo peer review to withstand scrutiny from professional colleagues in their field. After that, usually further studies are needed, and even the most promising results need to be duplicated elsewhere before becoming mainstream practice. Each promising finding is simply a building block for further findings, hopefully leading to an eventual “big picture.”

Sharing Research With CHD Families: An Institutional Necessity

Touring the lab at Children’s Hospital of Wisconsin, and seeing firsthand how dedicated the researchers there are to helping CHD patients gave me new hope as a heart parent, as well as an inspiration to keep advocating for all the lives that will be touched by CHD. It gave me hope that there is either a cure or a radical shift in how we understand and treat CHD on the horizon. Many heart parents rely on social media posts from other parents in order to learn about important research findings and the results of the latest studies. Many of us only hear about this vital work after the fact, and have little means of learning about the latest, cutting-edge discussions and studies that are happening at our own centers. I commend Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) for their dedication to sharing their current research with families. Their blog and Facebook posts, as well, as their annual Feel the Beat gathering, which includes a science fair and demonstrations of their current projects for all ages, is refreshingly accessible. The biennial Heart Parent Education Day at the Medical College of Wisconsin/Herma Heart Institute also strives to inform heart parents about standards of care in pediatric cardiology, as well as their latest programs for patients. I urge all pediatric cardiology institutions to get the word out about the great work they are doing – whether through a newsletter, blog, social media page or in-person events – to the CHD community. Making in-person events family-friendly helps heart parents attend these events without the stress and expense of finding childcare. When heart parents are empowered not only with knowledge, but also the hope of such inspiring research, they are even more motivated to spread the word to their social and advocacy circles – which is a win/win for everyone.

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Photo via Giselleflissak on Getty Images

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