In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).
Today we will hear from Andrea Baer, Director of Patient Advocacy for Mended Little Hearts and mom to Trenton.
Our son, Trenton was born on St. Patrick’s Day in 2009. A mere Six hours later we were given the devastating news that Trenton had a congenital heart defect and Down syndrome. He would need open heart surgery to survive. The next few months were full of learning a new language of heart defects, a new way of life in caring for a child with complex critical needs, and finding out how incredibly important it is to have access to health care.
As a family who had never faced a health care crisis we were ill prepared and scared. In order to stay home with Trenton, I had to quit my job, which reduced our family income by half. However, we were grateful to have access to the Medicaid program as a secondary insurance to provide him with the care he needed. At just 11 weeks, Trenton had his open-heart surgery at the Children’s Hospital of Pittsburgh and is thriving today because of that excellent care.
Those things would not have been possible without the Medicaid program. Trenton’s care cost over $1 million dollars his first three months of life. Even with our employer-sponsored insurance, we would have been bankrupt with co-pays and out of pocket expenses as out of pocket for that would have cost our family $200,000.00.
Thankfully, the Medicaid program could help cover those costs and we could focus on the important things, like keeping Trenton healthy. I could focus on caring for him and helping him to thrive. Trenton has had five other surgeries in his short eight years. He has been an amazing fighter throughout this journey. He continues to need life-long care, but he is in second grade at our local elementary school and is doing fabulous. He is succeeding and thriving today because of the support that he has been able to receive through Medicaid.
I fight daily for his education, health care and rights as a person with a disability. I am sad and hurt that I now must take on the fight for his care in the future. Medicaid provides us with not only the health care that he needs, but also the educational support within school that he needs to thrive and become a productive member of society as an adult. I am a mom, who is now praying that her son’s next open-heart surgery (which he will need) happens before his Medicaid program is stripped away, and honestly, that is a terrible situation to be in.
Looking for more resources for parents of children with CHD? Click here to learn more about Mended Little Hearts