As a pediatric cardiologist, my specialty is treating children’s hearts, but as a pediatrician, I also recognize that surrounding each heart is a child. My job is to take care of both.
Part of my job includes having hard conversations with expecting families about their child’s abnormal heart, often trying to describe the complex heart diagnosis with a poorly drawn sketch on a sheet of printer paper. Through teary eyes and tissues in a claustrophobic exam room, I watch as plans for baby showers and nursery décor are quickly replaced by talk of heart surgery and hospital stays.
When this diagnosis pulls the rug out from under these families, I hope to offer a soft landing place, a team of specialized pediatric providers to take care of these children as they undergo heart surgery — sometimes, in the first week of life.
The reality, too, is that as families worry about their child’s health, many are also often worried about the cost of care. This is a fear no family should face when it comes to getting the care their child needs.
Many of these children will need access to specialized providers throughout their life to help them grow and thrive. Luckily, Medicaid and Children’s Health Insurance Program (CHIP) — here in Kentucky, called KCHIP — serve as the backbone for caring for children with special health care needs, and approximately half of children I care for with heart disease rely on these programs for specialized care.
Yet, right now these programs are at risk for sweeping cuts as Congress negotiates the budget. Any proposed funding cuts to Medicaid and CHIP would place these children at risk, and so many more in our state and across the country.
I wish that these conversations I had with families were a rarity. However, heart disease that children are born with is the most common birth defect, occurring in almost 1% of births. Approximately a quarter of children born with abnormal hearts will need heart surgery or other interventions to survive.
In Kentucky, Medicaid and KCHIP cover nearly half of children overall and more than half of children with special health care needs. These are the children whose hearts are represented by my drawings. I yearn for these children’s smiling pictures as they live and grow with battle wounds of surgical scars, but I know that these heart warriors need our help.
As someone who sees the importance of Medicaid and CHIP first-hand, I urge our Kentucky lawmakers to reject cuts to these vital programs. Because of these programs, my patients and so many more Kentucky children grow up healthy in our communities.
Medicaid and CHIP are lifelines for children and families in our state, including the children who belong to these special hearts. We must protect these programs so patients like mine can thrive. Congress must do what’s right and protect Medicaid and CHIP.
Allison K. Black, MD, FAAP is a pediatric cardiologist in Louisville.
