There are approximately 1.4 million adults in the United States living with congenital heart disease. (Stock photo Sewcream Studio/Getty Images)
Congenital heart disease is the most common of all birth defects; it is estimated that a child is born with a heart defect every 15 minutes. One in four of these children has a “critical” CHD, meaning that they will need surgery or other procedures in their first year of life.
This week is Congenital Heart Disease (CHD) Awareness Week. Friends and families will post pictures on social media of their heart warriors showing off their “zipper” scars as part of the #rockyourscar2025 campaign. A “zipper” scar indicates that an individual has survived open heart surgery.
The stories of these remarkable children and adults are inspiring. My own heart warrior, my son George, underwent two open heart surgeries before he turned 2 years old. Because of his prematurity, my son was barely five pounds when he had his first open heart surgery. When we got news that he made it through this first surgery, we cried tears of relief and felt so incredibly grateful.
While we take time this week to honor these children and their families, it is important to recognize that there is so much more to their stories than what can be gleaned from a photo. The real work begins after these procedures are completed. Uninterrupted access to care is vital to ensure that these children survive to adulthood and thrive. Medicaid helps meet these needs for many CHD families — but unfortunately Medicaid funding is in jeopardy as part of a menu of proposed cuts for this session of Congress.
Medicaid insures more than 50% of individuals living with CHD. Data from the Centers for Disease Control indicates that children with heart conditions are three times more likely to have special healthcare needs than children without a heart condition. These children may require private duty nursing, special medication, physical therapy, speech therapy, and treatment for developmental or behavioral health needs.
Additionally, Medicaid provides access to prenatal screening services that ensure a higher rate of survival for infants born with CHD. Medicaid pays for approximately 41% of all births nationwide and 33% of births in Virginia. CHD can be diagnosed early when families have health coverage that covers prenatal screening. In fact, my son’s heart defects were discovered during a routine ultrasound, which led to a fetal echocardiogram that confirmed his diagnosis.
After his first open heart surgery, half of my son’s diaphragm was paralyzed and he had digestive issues due to poor circulation. We spent six months in the NICU and PICU, and eventually my son came home with a feeding tube and a tracheostomy. In our case, Medicaid coverage was essential to pay for home-nursing care because our private insurance did not offer this benefit.
Just in 2019 alone, hospital costs for individuals living with heart defects in the United States exceeded $9.8 billion. We racked up millions in medical bills during our son’s hospitalization. Because we had Medicaid coverage, we did not have to worry about expensive medical bills, and we could just focus on his care and recovery.
Caring for a medically complex child is incredibly rewarding, but it is also incredibly taxing. Without access to Medicaid and the private duty nursing benefit that it provided, I would have likely had to quit my job. My family would have lost my income as well as my employer-sponsored health insurance. If Congress goes through with its planned cuts to Medicaid, many CHD families will likely be harmed.
CHD is not a curable condition; it requires lifelong monitoring and treatment. Due to advancements in medical technology, those born with heart disease are living longer and we must ensure that they have continued access to care after turning 18.
There are approximately 1.4 million adults in the United States living with CHD. A large proportion of these individuals do not continue receiving regular cardiac follow-up care after reaching adulthood. Low rates of insurance among this population may partially explain this phenomenon; rates of uninsurance among adults living with CHD are historically higher than those with other chronic health conditions. However, studies indicate that significantly more adults living with CHD have been able to access insurance since the Affordable Care Act was passed in 2010. Making cuts to Medicaid would erase this progress and create additional barriers to care for adults living with CHD.
By providing coverage to children, mothers, and adults, Medicaid plays an important role in the early detection and treatment of CHD. As we raise awareness around CHD this week, let’s also take an opportunity to fight cuts to Medicaid.