Before Zoey Jones made her entrance into the world, she was diagnosed with Congenital Heart Defects (CHD) in-vitro at a 20-week ultrasound. Shortly after, she was declared uninsurable due to pre-existing conditions. This meant Zoey’s mother, Tori, would have to foot the bills for her daughter’s complex medical needs.
Tori immediately applied for TennCare, Tennessee’s version of Medicaid, and discovered the very low household income and asset limitations that would prevent her from receiving financial help with Zoey’s medical care.
Tori is a graduate of the University of Georgia and at the time of Zoey’s diagnosis, was earning close to a six figure income and owned a home in Mount Juliet, Tennessee.
At Zoey’s birth at 36 weeks, she was diagnosed with additional birth defects that required multiple surgeries within the first three months of her life. Her heart was much worse than initially expected, with her right side being very underdeveloped. She spent the first eight months of her life at the Vanderbilt Children’s Hospital. After returning home for a short time, she was readmitted, spending almost two years there.
During this period, Tori quit her job and sold her house to ensure Zoey’s medical insurance would continue covering the costs of her child’s care. Both sets of grandparents supported the family by purchasing a home in Nashville close to the hospital.
In total, Zoey has been in surgery 13 times, three of which were open heart surgeries. In the future, she will require an additional open heart surgery to complete the recirculation of her blood. In 2014, she experienced a stroke, which affected the right side of her brain. This resulted in a loss of motor skills. Zoey also required a ventilator at this point due to chronic respiratory failure. Each of these severe medical needs are further deemed as pre-existing conditions, meaning Zoey will never be eligible for private insurance.
When Zoey was two years old, Tori went back to work but had to accept a reduced salary to comply with reduced income restrictions in order to keep Zoey’s insurance. This has produced far reaching impacts for Tori and her family. For example, Tori has paid more in taxes back to the federal government than she is currently allowed to make.
With Zoey turning six this year, Tori hopes that the current movement around passing a Katie Beckett / TEFRA program will prove to be successful. If so, both her and her daughter will benefit greatly.