How Families Can Navigate Healthcare for Congenital Heart Disease

Health & Wellness |


Congenital Heart Disease Peds Blog

When you learn about an issue with your baby’s heart, it can be difficult to process all the information you are learning and navigate the medical care he or she needs. Let’s walk through some key points to better understand how to manage your child’s congenital heart condition.

What’s CHD?

Congenital heart disease (CHD), also called a congenital heart defect, describes anything that affects your baby’s heart as it formed in the womb. This includes a wide variety of diagnoses, including problems with heart valves or heart muscle, a hole in the heart, issues with blood vessels moving blood flow to and from the heart or a combination of these, like hypoplastic left heart syndrome. Although it begins in the womb, some CHD diagnoses can be made at any time in a child’s life, including adulthood—though it’s rare.

“CHD presents itself in a few different ways: we can diagnose it before the baby is born and choose to deliver that baby at a place like Riley, where they can get immediate cardiology attention,” said Dr. Larry Markham, a pediatric cardiologist at Riley Children’s Health. “Or it shows up in the first critical weeks of life after a baby goes home, when the parents notice poor feeding, low oxygen or fast breathing. CHD can also appear years later in symptoms like poor growth, rapid breathing or a heart murmur. Even adults can present with a CHD diagnosis.”

CHD is the most common birth defect in children, affecting one in 100 babies. And while diagnosis and surgery can occur early in your child’s life, it’s a condition they will likely manage throughout their lives.

“CHD is a lifelong disease that doesn’t always end after surgery,” said Dr. Elle Geddes, a pediatric cardiovascular geneticist at Riley. “Your child likely will need to have cardiac monitoring throughout their life, and there could be other associated health concerns. That is one reason why early assessment with a medical geneticist and genetic testing is such an important part of care, to see if we can identify something that helps us take better care of a child.”

Why is it important to have specialized care for CHD?

While CHD is common, treating the full range of heart problems requires experience and resources. The more patients a pediatric cardiologist treats, the more experience they gain. The availability of resources in a major heart center like Riley include a cardiovascular intensive care unit with dedicated cardiac intensivists, specialized cardiac imaging and diagnostics, home monitoring programs, supportive services for growth and development and access to cutting-edge genetic assessments also helps ensure your child has the focused resources they need.

“We’ve had congenital heart care at Riley for over 70 years, so we’ve seen the rare and unlikely cases, and we’ve learned to navigate the uncertainties that each individual patient may face,” Dr. Markham said. “Most places treat a baby in the neonatal ICU, where cardiologists come in to provide care. At Riley, we have a cardiac floor where everyone committed to heart care comes together to care for your baby, all in one place. We put your baby’s needs first.”

It's also helpful to seek a CHD program that brings together many specialties—like cardiology, neonatology, genetics, rehabilitation and surgery—to offer a full spectrum of care.

“The more minds the better. Every patient that undergoes surgery here at Riley has their case reviewed by dozens of talented, dedicated specialists who care for patients with CHD from all different angles,” Dr. Geddes said. “Large healthcare centers can offer all the necessary pieces to the puzzle to provide the best care possible.”

What procedures and treatments can I expect my child to undergo for CHD?

CHD encompasses so many different types of heart problems that your child could need anything from a very straightforward procedure to a more complex, lengthier hospital stay. If you learn about your child’s diagnosis prior to birth, visit the hospital and learn what to expect and what service are available for CHD support once your child is born.

“We invite parents to tour our Heart Center and get a sense of where they’re going to be and what it looks like. It’s always daunting when a child undergoes surgery, so we try to engage families in the discussion, and our Child Life and other services are here to support the parents and siblings,” Dr. Markham said. “Be sure to line up family members who can help out with whatever you need at home while your child is receiving care.”

It can be a stressful and challenging experience for parents and families when a child is undergoing treatment. Be sure to ask for what you need and talk to your care team if you feel overwhelmed or have questions.

“Also, be kind to yourself. You’re going through this, too. We want to support you wherever we can, whether that’s through social work, financial navigators to help with health insurance, meal cards or a just a blanket,” Dr. Geddes said. “In pediatrics, we care for the whole family because kids need you to do well in order for them to do well.”

How can I support my child’s mental and emotional needs during CHD care?

Simply having an awareness that CHD comes with mental health risk factors is a big first step to supporting your child through their medical care. Some children need the support of therapy as they go through their treatment journey, and others do not. Medical care can add stress to family dynamics, especially for parents. Knowing that stress and time in the hospital can affect your child’s mood and learning at school can help you prepare resources ahead of time. At Riley, those needs can be identified during neurodevelopment follow-up appointments.

“We offer neuropsychiatric evaluations for school-age children to help identify where their strengths are, how they learn and how to work with the school. If your child’s a visual learner, we should tailor an approach for visual learning,” Dr. Geddes said. “We have a psychologist who focuses on patients with CHD. Several of us in the program, including myself, have CHD, which gives us unique insight to the journey. Several of our team members have been cared for at Riley since they were infants or children. There are also a lot of parent resources and support groups to vent and share with someone who’s lived the same experience.”

Related Doctor

related doctor headshot photo

Gabrielle C. Geddes, MD

Medical & Molecular Genetics

Larry W. Markham, MD, FAAP, FACC

Larry W. Markham, MD, FAAP, FACC

Pediatric Cardiology