Liviana's Story: An Accident Can Change Your Life Forever
When a tree branch fell on our daughter Liviana's head, she became a totally different person. Medicaid was there for her in her time of need.
by Lindsay Sulzer
My name is Lindsay Sulzer. I live in Ohio with my husband James and our three children, Noah, Liviana, and Reed. Reed is 6, and he’s a total ham that talks non-stop. He loves being silly and dancing. Noah is 11, and he’s a more serious kid, with a very logical mind, and also enjoys playing sports, hockey and baseball right now.
Liviana, who we call Livie for short, is nine. Livie is so full of joy and love. She’s an incredibly expressive little girl who always lights up when her caregivers show up and is a huge hit with both staff and classmates at school. Teachers tell us that when they’re having a bad day, they’ll run to Livie to cheer them up. Parents have shared that their children are so excited to find out Livie is in their class. She does this really cute hug, kiss, boop on the nose routine, she’s just such a happy, enthusiastic child.
Livie had a normal childhood until the day in 2020 that she went out in the yard to play with her brothers and was hit by a falling tree branch in a freak accident that could have happened to anyone. It was a beautiful hot day in the early days of the pandemic, and the next minute, our lives changed forever. She was rushed to the hospital, where she needed an emergency craniotomy to relieve the pressure in her swelling brain. She spent two and a half months at the hospital in Austin, where we lived at the time, and then transferred to Kennedy Krieger in Baltimore, which has specialists who focus on pediatric brain injuries, for another two and a half months.
The Livie who came home to us couldn’t even roll over without assistance. She needed a shunt to drain fluid from her brain, was completely dependent on a feeding tube for nutrition, and couldn’t speak. She went from being a mischievous ham who loved performing and hiding under the bed sneaking fruit snacks and jelly beans to a kid who needed constant monitoring and help with every single thing.
Without Medicaid coverage, Livie’s medical expenses would have sacrificed the financial future of our family, and the level of care she needs now would be impossible to sustain. In the aftermath of the accident, Medicaid was essential for covering the nursing care and everything else she needed and for giving our family some breathing room as we adjusted to these huge changes and managed our grief. For the first two years, we had to focus full time on her with the hope of returning her to the child she was before her accident. She was going to therapy every day, or having someone come to the house, and her needs were so high.
Livie has made some progress thanks to extensive therapy and medical care, but she needs assistance for so many of her activities. She can feed herself now and continues to get medications and water through her g-tube, she vocalizes along to music although she can’t talk beyond a few words, and she does her own version of dancing. She’s learning how to use a speech generating device and she’s blooming into her own person, but she’s going to need substantial care for the rest of her life.
In Texas, it took us nine months go through the process to get Medicaid coverage for Livie. The waiting lists there can be years long, but I persisted and made lots of phone calls to find a way to get that for her. When we decided to relocate back to our hometown in Ohio for additional family support, I was terrified that we would be stuck at the back of the Medicaid Waiver line. Again, I was determined to get what Livie needed and started connecting with the Medicaid waiver program a year in advance to get Livie set up with the providers, suppliers, and nursing care she needed. Getting on the Medicaid waiver and renewing it each year requires significant paperwork and effort. In addition to this time-consuming task, Livie’s care involves so much more than a typical child with communicating with providers and school staff, refilling supplies and medications, arranging to fix broken equipment, coordinating caregivers, taking her to her acquired brain injury clinic, and the list goes on and on.
Caregiving needs for medically complex children are so much higher, and relying on family caregivers alone is unsustainable. Medicaid helps lighten the load so we can be the best parents we can be to Livie and our other children. We have assistance with feeding and dressing and medicating Livie for three hours a day or so. Her caregivers are also essential for helping her play and enrich her life, and for facilitating play with other kids, who are already clamoring to visit Livie over the summer vacation. Medicaid has also paid for surgeries and procedures she needs, such as hip surgery to address tightness caused by her mobility issues.
Livie is able to go to school because of Medicaid. At school, she spends a mix of time in general education classrooms and extended standards with other disabled students. She makes lots of friends in school, although her playing doesn’t always look like it did before. She gets physical, speech and occupational therapy at school as well, and that is supported by Medicaid.
Medicaid isn’t just essential for Livie, and such a huge relief for us. It’s what has allowed me to return to the workforce, where I apply my degree in chemical and biological engineering to assisting biotech companies with commercializing their discoveries for treatments for cancer, autoimmune disorders, rare diseases, and neurological impairments. I am able to directly help other kids like Livie, to contribute to society, because of her Medicaid coverage. My husband James is a mechanical engineer and he worked on technologies initially for stroke patients, but has moved into projects related to pediatric traumatic brain injuries like Livie’s.
Livie had this totally freak accident that could happen to anybody. We had this typical life and then our lives turned around on a dime. You can’t control for something catastrophic like that, and Medicaid is so critical for stepping in to provide medically complex kids like Livie with immediate and long-term support. Without Medicaid, we would have drowned in the months following her accident, and would be struggling today. Even though we are well-educated and are in a financial situation that is stable now, Medicaid is still critical. It’s not just for children with disabilities; it’s for their whole families. Getting that care allows us to spend more time together as a family, and less time worrying over bills. Medicaid is not making our lives luxurious, just livable.