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Meet Caitlin, age 16, from Sherwood, Wisconsin
Shortly after being born premature at 29 weeks, Caitlin suffered a stroke. As a result, she developed hydrocephalus, a buildup of fluid within the brain. This condition required a shunt to be surgically placed to drain the excess fluid. Caitlin has had many brain surgeries to repair and replace the shunt over the years.
In addition to hydrocephalus, Caitlin has cerebral palsy, epilepsy and a mild dilation of her aorta. She has had surgeries on her eyes, had her tonsils and adenoids removed and has had two hernia repairs. Caitlin’s surgeries took place at Children’s Hospital of Wisconsin, and she sees a variety of specialists in neurology, neurosurgery, orthopedics, cardiology, physical medicine and rehabilitation, palliative care, gastroenterology and pulmonology.
Cerebral palsy has caused many orthopedic issues for Caitlin and required multiple surgeries on her hip. In 2015, she underwent spinal fusion for her scoliosis. She can now sit straight in her wheelchair and her breathing has improved greatly. Recently, she had surgery on her feet to correct a deformity caused by her muscles pulling too tight. She now can comfortably wear her AFO braces and shoes again. Caitlin regularly works with a physical therapist to stretch her tight muscles and improve her mobility skills and independence.
To treat her epilepsy, Caitlin has tried many different medications over the years. However, it wasn’t until 2012 that she found one that successfully controls her seizures. The drug is one of last resort and costs more than $3,000 per month. She also requires numerous medical supplies on a monthly basis and regularly uses a bath chair, wheelchair, gait trainer and special bed mattress to prevent pressure sores.
While Caitlin’s family does have primary insurance that pays for some of her care, it does not cover many of the necessary medications and supplies. Thankfully, her family is able to receive assistance through the Katie Beckett Program. Once she turns 18, Caitlin will likely go into the IRIS Program, which is a Medicaid program for adults with long-term care needs.
“We are extremely grateful that she is able to receive the care she needs from Children’s Hospital of Wisconsin and that the cost has been covered by Medicaid,” said Lisa, Caitlin’s mom.