Skip to main content
Say Ahhh's picture

Add your voice to the comments

Recently, we shared the story of Austin Carrigg and her family, and the journey they went on together with their adopted baby girl, Melanie.

When Melanie united with her mom, dad, and two brothers in 2012, the Carriggs knew the road ahead wouldn’t always be a smooth one. Melanie came into the family a medically complex child, the diagnoses including Down syndrome, congenital heart defect, and deafness. But they felt better prepared than other families and ready to lead the charge -- one of their sons was diagnosed with Mastocytosis, and they understood how to navigate the stresses of hospitalizations and sudden emergencies, something that Melanie needed from her new family.

As Austin wrote, they “would stick together and grow closer, not in spite of her but because of her.”

But as all parents of medically complex children know, the complexities can be unexpected, and expensive. Shortly after adopting Melanie, she was admitted to the hospital and they learned two weeks later that she would need open heart surgery, which came with a down payment of $100,000 (10 percent of the entire cost). While her other children were enrolled in TRICARE, Austin and her husband could not enroll Melanie in the plan quickly enough, and time was literally against them. Their bills racked up fast, but they needed to act even faster to get her the care she needed.

Relief came when someone recommended they look into Medicaid. As Adam Searing from the Georgetown Center for Children and Families shared in an earlier blog, Medicaid plays an enormously important role for medically complex children like Melanie: “Caring for a medically fragile child at home is a financial undertaking like no other, completely overwhelming even parents with good jobs, private health insurance and plenty of extra time.” Because of Medicaid, Melanie was able to have a successful open heart surgery. And because of Medicaid, Austin and her family wouldn’t be thrown into severe debt over health care costs.

While the road wouldn’t always be easy, the Carriggs could at least rest knowing she would be covered. Austin recounted a story of rushing Melanie to the hospital where she lapsed into a coma. This led to a months-long battle between finding providers who would help Melanie to trying to find out what was going on. Finally, Melanie was diagnosed with Glycogen Storage Disease Type 0. After many hours of therapy, covered by Medicaid, Melanie’s health improved. She even became strong enough to join a T-Ball team.  

“We were told not to hold out hope for a bright future,” Austin wrote. “But experience one interaction with Melanie and you’ll see for yourself: she is the very definition of brightness, with all the sass any five-year-old can give.”

https://vimeo.com/265629870


The views and opinions expressed in this post are those of the author(s) and do not necessarily reflect those of MomsRising.org

MomsRising.org strongly encourages our readers to post comments in response to blog posts. We value diversity of opinions and perspectives. Our goals for this space are to be educational, thought-provoking, and respectful. So we actively moderate comments and we reserve the right to edit or remove comments that undermine these goals. Thanks!