As Congress begins again to consider policies related to health spending, there’s no better time to increase awareness of the health care needs of America’s children who could be most affected by major health policy changes. Congenital heart defect is the most common birth defect, affecting more children than spina bifida and Down syndrome, yet many remain unaware of this condition and the needs of the 40,000 children born with CHD annually in the United States.

My husband and I learned that our son, Angus, had a heart defect when I was 20 weeks pregnant. Montana doesn't have a pediatric hospital so I delivered him in Boston and he had heart surgery at Boston Children’s Hospital at just two days old, and at 14 days old, he got a pacemaker to keep his heart beating.

Most of the specialized cardiac care CHD kids need is provided in children’s hospitals, which see an average of 30,000 cardiac cases per year. Of these cases, 45 percent rely on Medicaid for that care. Not just for those from families with low incomes, Medicaid helps cover children from all backgrounds when serious medical issues suddenly require a level of care above and beyond the needs of most kids.

There are roughly 3 million children in our country who have a complex medical condition like CHD, and 2 million of them rely on Medicaid for primary or secondary health coverage. These children also account for about 40 percent of all Medicaid spending on children, as complex medical conditions require frequent appointments for specialty care, in addition to expensive medications.

When the bills started rolling in from Angus’ surgeries, we were terrified. As middle class Americans, beginning our adult lives, we weren’t sure how we were going to manage the financial burden.

Boston Children’s Hospital is the best in the country, but it was also out of network. At the time, we were covered by insurance through my employer but even then it only covered around half of the $500,000 in medical bills. With a financial burden of $250,000, we would have likely had to file for medical bankruptcy, ruin our credit, and forfeit our chance to own a home. Thankfully, we found out that our son would qualify for Medicaid for the time he spent in the hospital.

Thanks to cutting-edge research and treatments, children with CHD and other complex medical conditions are seeing better outcomes. But these innovations are only effective if they are made available to all patients who need them. Last year, Congress debated changing the way Medicaid is funded by capping federal support for the program, but such reform would not have provided adequate funding to meet children’s needs. What was proposed would have resulted in deep cuts to children’s portion of Medicaid funding.

It is understandable, even necessary, to address budgetary concerns when funding federal programs such as Medicaid. However, proposals that would place a cap on federal Medicaid contributions put children’s care at risk by transferring costs to states that may not be able to cover them. It is up to Congress to make and keep children’s health a top priority.

Angus will continue to need health care into adulthood. Children covered by Medicaid, compared to those who are uninsured, enjoy better health, educational and economic outcomes as they grow to become healthy and productive members of society. For children with CHD like my son, Medicaid helps ensure they receive the care necessary to reach their full health potential.

It is critical that any new reforms or improvements that Congress considers for Medicaid take into account the unique health care needs of children, especially those with CHD and other medically complex conditions.

Lindsey Bona-Eggeman is the lead coordinator for Mended Little Hearts of Montana. She and her son, Angus, live in Seeley Lake.