Faces of Medicaid: Suzanne’s story

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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 journey started in Bozeman Montana in November of 2009 when I was so excited to find out that my husband and I were expecting our second child. Not long after we got the news, I started experiencing complications with my pregnancy due to a tear in my placenta. Initially, my doctor thought this wouldn’t be a big deal, but at 22 weeks the problem grew serious enough that I moved away from my husband in Montana to South Dakota where I was admitted to the hospital for the remainder of my pregnancy.

We chose to go to Sioux Falls for care because my parents lived there, so they could provide support and help with the care of my older daughter, Annika. Just a week after my arrival, Shelby was welcomed into the world weighing 1 pound, 4 ounces. She was quickly baptized and rushed to the NICU.

Shelby’s first days
About 3 hours passed until I could see my baby after I had given birth. I found out later it was because Shelby's situation was dire: she was dying and nobody wanted me to come and see her until they had a better handle on the situation. I also learned that one of the nurses really fought for Shelby: she yelled out that her dad was 10 hours away and they couldn't let Shelby die! When that happened, they pulled out her breathing tube and put in a larger size. From that point on she was stable!

After the first time I laid eyes on her I NEVER left her side and I would always tell her that if she couldn't keep fighting, mommy would understand. As a mother when your child falls down or gets hurt you take them into your arms and hold them and tell them everything is going to be ok. How do you do that when your baby can't be touched and is behind the walls of an isollete? I tell people to imagine your child is hurt behind a glass wall and you have to tell them it is ok from behind the wall not knowing if they can hear or see you.

A heart surgery in Minneapolis
As she approached 7 weeks, I was told that Shelby needed heart surgery and would have to be moved to Children’s Hospital in Minneapolis for the procedure. The neonatologists told me: "Suzanne, Children’s Hospital is the best there is and if Shelby were my baby she would have already been there." After the successful surgery and being absolutely blown away by the care she was getting I called my husband again to discuss our future. We decided we needed to sell our house in Montana and move our lives to Minnesota because the care that we were receiving at Children’s was something that couldn't be taken lightly.

We were encouraged to apply for Medical Assistance due to Shelby’s severe premature birth. Because we came from another state, Children’s was an out-of-network provider, and that limited the coverage the insurance would offer. Children's is a world renowned healthcare facility in dealing with premature birth and we wanted our daughter to have the best care possible...even if it meant financial ruin. During this time I was grateful to know that Medical Assistance was there for us to help take care of the enormous medical expenses.

In and out of the hospital
After close to 6 1/2 months in the hospital, we finally got to bring home our bundle of joy with a few added accessories. She had a feeding tube and supplied oxygen. For a while then, about every 10 to 15 days we were back in the hospital. After one especially scary moment, we took Shelby to the ER and she stopped breathing. She was admitted to the PICU and it was determined that Shelby's severe pulmonary hypertension was the reason she was struggling so much. After multiple attempts to have her breathe on her own, I made the decision to have a trach placed: that meant putting a hole in my little girl’s throat. It had been a month since I had last held my baby.

Finally, two months after we had arrived, we were going to take Shelby home! It felt like every time I had gotten Shelby in my arms someone or something was ripping her back away from me, I kept thinking “it’s only a matter of time and we will be back, I know this cycle.” But as soon as we were home our nurses kept telling me she was going to stay home where she belongs and they would help me keep it that way. I was so relieved everything was falling into place. She came home in May 2011 and she has stayed home!

Why Medical Assistance matters
Medical Assistance has helped us in so very many ways. Having a child as medically complex as Shelby is virtually unaffordable, even with private insurance. Exclusions in coverage; the fact that Private Duty Home Nursing is considered a "luxury" by private insurance; and lifetime coverage limits that could easily be exceeded in one year’s time; all make MA a helpful safety net to avoid a huge financial burden that could never be dealt with.

Shelby was born with a myriad of medical issues and no family should have to choose whether their child lives or dies based upon their ability to afford it.