Leianne and Matthew Taylor

Hamilton County

Leianne Taylor and her husband have 4 children. Their family had always been healthy, and insurance had never been an issue for them until their youngest son Matthew was born, and they were thrown into a whole new world of coverage denials and TennCare appeals. When you have a child with special health care needs, it changes your frame of reference for the rest of your life. Leianne says no one really knows how blessed and fortunate they are to have healthy kids until they have a sick child.

Matthew was born with a complex congenital heart defect. When he was a tiny newborn, the only thing keeping him alive was a half-inch piece of plastic that connected his heart to his lungs. He had his first heart surgery when he was a newborn to replace the piece of plastic with an artery to connect the heart to the lungs. There was nothing Leianne could do but sit back and hope the doctors knew what they were doing. She says when you’re in a situation like this, you don’t sleep. Your whole life is about making sure this sweet baby stays alive.

After Matthew was born, he was eventually healthy enough to go home. When you are a mother of a child with health issues you have to know all the medical terms, how to make sure your child is okay and when you should call the doctor. But sometimes, mothers don’t need all the medical technology, they just know when something is not right. One day when Matthew was two months old, his mom could tell that something was wrong. He had been abnormally fussy for a while and nothing would make him feel better. Leianne took him to the doctor and his lungs were filling with fluid. He almost died. If Leianne had not taken him to the doctor when she did, he would have died from congestive heart failure. Matthew had been growing faster than the doctors expected, so they hadn’t put him on a high enough dose of medicine to keep liquid from accumulating in his lungs. His mother’s intuition saved his life. Sometimes, Leianne said, you just have to follow your gut.

Today, Matthew is 15 and just started his sophomore year of high school. He is doing really well, but it has not been without struggles. Thankfully he had health insurance through TennCare. He has had many heart surgeries, and in 2010 he received a life-threatening diagnosis right after TennCare tried to cut his coverage.

In December of 2009, Matthew was in second grade, and the doctors found a brain tumor. In January 2010, they found out that it was malignant. He was diagnosed with a medulloblastoma. Around the time of the diagnosis, TennCare was claiming that Leianne had not provided them with all of the information they needed to continue Matthew’s coverage. This was simply not true. Leianne would never make a careless mistake when it came to her terminally sick child. Thankfully, TennCare realized their mistake and continued Matthew’s coverage and he was able to receive the chemo treatment that he needed. Today he has no signs of cancer, and he did not suffer from any cognition problems from the illness. However, he has to wear glasses and hearing aids now.
Leianne’s husband is a minister. They received health coverage through their denomination, but when her husband briefly worked at a non-denominational church, they lost that health insurance. Ever since then, getting coverage has been extremely trying. Especially because of their family’s special health care needs. Leianne worked part-time and was under a lot of pressure to work full time. When TennCare tried to deny Matthew coverage, she considered working full-time so that she could receive health insurance; however, then she would be left to choose between taking care of her sick child or providing health coverage for him. No mother should ever have to make that choice. Thankfully, TennCare did not drop Matthew’s coverage and Leianne did not have to make this impossible decision. Leianne’s husband also has a history with cancer. 19 years ago, he was diagnosed with bladder cancer. Thankfully, he has not had any reoccurrences. Leianne and her husband now receive coverage through Obamacare, while Matthew is on TennCare.

While Matthew still battles more health issues than a normal 15-year-old boy, he is thriving despite his setbacks. It is scary to think where Matthew would be without TennCare. Both the ACA and Medicaid are being threatened right now by congress. Some of their decisions could be detrimental to people like the Taylors, a hardworking family who have experienced unwarranted health difficulties.

Matthew is one of the 1.5 million people benefiting from TennCare. If TennCare has helped you, tell us your story! You call us at 615-846-4701 or share your story here.