Faces of Medicaid: Maria's story

voices mariasstory

Medical Assistance, Minnesota's Medicaid program, provides essential care for a broad range of families in Minnesota and nearly half of the program's beneficiaries are children. "Faces of Medicaid" is a year-long series that will highlight stories from some of the patient families at Children's Hospitals and Clinics of Minnesota who have benefitted from this safety net program. Protecting Medicaid is a high priority for Children's. Read more about why Medicaid matters to Children's.

My son Emerson was born on Nov. 11, 2011, by emergency c-section at Abbott Northwestern Hospital. Soon after he was delivered, he was transferred to Childrenís Neonatal Intensive Care Unit (NICU). Four days after he was born, he underwent his first open heart surgery.

At 20 weeks in utero, Emerson was diagnosed with Hypoplasitc Left Heart Syndrome (HLHS), a congenital heart defect (CHD). His first hospital stay lasted more than 90 days. In that time, he faced and overcame many challenges. We spent all of our holidays in 2012 at Childrenís willing Emerson to recover. From November 2011 to April 2012, Emerson was only home 16 days and the rest of the time he lived at the hospital. A year later, we have finally been home with Emerson more days than we have been in the hospital.

Leaving Chicago
Before we knew about Emersonís diagnosis, our life together in Chicago was just getting started. My husband Matt had just received his first job offer post-graduation, and I was halfway through my Masterís program. We were in a good place to have a child: insured, good job prospects and young.

When Emerson was diagnosed we knew he would need extensive medical care. We did our research. We looked at outcomes for the surgeries we knew Emerson would need. We talked to parents in support groups. We interviewed doctors. The outcomes at Childrenís with HLHS were consistently among the best in the country, and still are to date. In August of 2011, Matt and I packed up our life and moved to Minnesota. For me, this was a move back home since I grew up in the metro-area but we left job offers, school and stability to ensure our child received the best care.

Medical Assistance helped us through
Ultimately, it was the combination of moving and having a sick child that led us to rely on Medical Assistance (MA). I was lucky enough to find a part-time job, but it didnít offer benefits and Matt was unable to find work. Until Emerson was born, it was hard to remember why we left job opportunities in Chicago.

After his first surgery, Emerson was facing organ failure all while trying to recover from open-heart surgery. I truly believed that if we had stayed in Chicago, Emerson would not have survived. The caliber of the medical team at Childrenís and the strength of my son worked together to get us through those dark days.

We quickly realized that MA was the only viable option for us. We had no money to pay for private insurance. We are constantly grateful for the support of this program. Emersonís medical needs are numerous. He has private duty nursing 20 hours a day, sees 10 specialists, receives Early Childhood Family Education (ECFE) and physical therapy, and takes 15 medications. The costs are stupendous. MA has consistently provided the much needed support for our medically complex child.

Looking to the future
My husband and I have both started jobs in Minnesota and Emerson is now covered through private insurance. We are excited to feel as though we contribute to Emersonís care but it may not be enough to cover the full costs of Emerson's medical needs. We will apply for MA as a secondary insurance to help our family cover the enormous costs we will face over the next few years.

MA helped my family survive. It's a program that gives people chances and options. It helps children who were not given a choice about the medical complexities they were born with. I canít imagine where my family would be today without MA.

Resources for families
Many options for care and support exist in Minnesota for families that have a child with CHD. The Children's Heart Clinic and Children's Hospitals and Clinics of Minnesota websites both have information on CHD. For support, visit Lasting Imprint, Parents for Heart and Sisters by Heart.