This week is Congenital Heart Defect (CHD) Awareness Week, an annual observance to promote awareness and education about the heart defects that one percent of babies are born with in the United States. I spent several years working at UCSF on the Pediatric Cardiac Transitional Care Unit, and I have a close working relationship with the post-cardiac transplant team at Lucile Packard Children’s Hospital Stanford for my patients who have been transplanted. My experience caring for kids with heart problems makes me passionate about increasing awareness about CHD.
The heart is one of the first organs to develop in utero. In a normal baby, the heart’s four chambers and all the cardiac valves and arteries develop normally so the heart can work with the lungs to oxygenate the body when the baby is born. For kids with CHDs, the heart doesn’t develop properly causing problems from minor to life-threatening.
Congenital heart defects are almost always discovered during routine pregnancy ultrasounds—one of the many reasons prenatal care is so important. Once the CHD is identified, the pregnant mother can make plans to deliver her baby at a hospital with a pediatric intensive unit where specialists trained to manage CHD complications.
Depending on the severity of the condition, treatments can include monitoring, medication, catheterization, surgery, or a heart transplant. Minor CHDs include small holes or a slight narrowing and hardening of the arteries—problems that often repair themselves over time. Major CHDs often include missing or malformed parts of the heart. An easy-to-understand description of different congenital heart defects can be found online at www.kidshealth.org/en/parents/congenital-heart-defects.html.
Babies who require ongoing treatment and monitoring are typically those with more severe CHDs. Some children with severe heart defects such as hypoplastic left heart syndrome have oxygen saturations lower than normal. This can cause slowed development, both physically and cognitively.
Currently, no one knows exactly what causes these heart defects. Most are likely caused by environmental and maternal exposure, including being born to an obese or diabetic mother or one with certain infections during pregnancy; or being born to a mother who ingests certain chemicals during pregnancy. About 15-20 percent of all CHDs are related to known genetic conditions.
According to Mended Little Hearts, a non-profit, volunteer-led program providing hope and support to children, patients, and families affected by congenital heart disease, approximately 40,000 infants are born in the United States with CHDs each year. Although CHDs are the most common birth defect in the U.S. (as common as autism), comparatively little funding has gone into better understanding causes and cures.
In Ukiah, we are lucky because UCSF Pediatric Cardiologist Dr. Paul Stanger visits four times a year, bringing with him decades of experience as well as the tools necessary to diagnose and monitor pediatric heart conditions, including his portable echocardiogram machine. I’ve worked with Dr. Stanger for years and I can tell you, he is an incredible resource for our community. He helps educate parents about how to care for their kids with cardiac problems so the kids can live full, happy lives, and he works with patients and their families so they understand their treatment options, allowing them to choose what works best for them.
If you have children with healthy hearts, rejoice! You are so lucky! Help them strengthen those hearts. Get your kids outside and give them exercise. Put newborns on their tummies so they can get stronger. Encourage toddlers to explore outside in the fresh air. Sign up elementary school kids for dance and sports; go for walks together. Teach your teens how to care for themselves, including plenty of exercise and healthy food. Good health is a gift, one we should all treasure.
Cindi Mockel is a Family Nurse Practitioner in the Pediatrics Department at MCHC Health Centers, a local, non-profit, federally qualified health center offering medical, dental and behavioral health care to people in Lake and Mendocino Counties.