From the day he was born, Jamie vowed to share Titus’s story until he was old enough to share it himself. Titus was diagnosed before he was born with a congenital heart defect known as hypoplastic left heart syndrome, which means that the left side of his heart does not work. Unfortunately, there is no cure for the disease unless he has a heart transplant. During her pregnancy and the first days of Titus’s life, Jamie—who at the time was already a mother of one—gained a deeper appreciation for motherhood. “To have someone like Titus, who has been through so much, teaches you to appreciate the small things.”
There are many life experiences that people take for granted until they have a child with complex medical needs. The Maxfield family loves sports—Titus’s father, Marty, coached basketball for the local high school until Titus was born, and Jamie would be the bookkeeper at these games. However, because basketball season often coincides with flu season, the family does not attend games anymore in order to protect Titus’s health. Community is important to their family as well; however, with Titus’s chronic diagnosis, the family has had to limit the number of visitors they have to their home. In addition, both Jamie and Marty have had to change their work schedules in order to meet Titus’s needs.
While their lives have changed in many ways since Titus’s birth, Jamie and Marty still know joy, love, and happiness. Jamie describes Titus as her most outgoing child. “You wouldn’t know that he has a heart condition that could slow him down,” says Jamie. He has a sense of humor and a hilarity that is irresistible. Through his snuggles, cuddles, kisses, and hugs, Titus makes each family member feel loved and connected. On being a mother, Jamie says there is a precious unconditional love that you cannot explain until you have your own child.
Jamie carries this love with her into her work as a nurse. She loves her job because she can care for those who aren’t able to take care of themselves. Moreover, she knows she is making a difference. Sometimes, she shares her son’s story to inspire hope in her patients. Jamie believes that you don’t give up. You must try everything you possibly can to make circumstances better.
It was in the spirit of not giving up that TJC encountered Jamie. She reached out to us because her son was losing his TennCare, TN’s version of Medicaid, which helped the family tremendously by covering the cost of many of Titus’s treatments. TJC was able to break down complicated policy and program eligibility so that the family really understood what was and was not available to them. We further empowered Jamie with tools and encouragement to advocate for the Katie Beckett waiver. Tennessee is currently the only state that does not have a version of the Katie Beckett waiver, which allows children with complex medical needs to get health coverage through Medicaid, no matter what their parents’ incomes are. Thanks to families like the Maxfields, and advocacy by TJC and partners like the Disability Coalition, a Katie Beckett bill is currently moving through the legislature. Until the state has a waiver like this, Jamie will continue to fight alongside other families to get their children the health care coverage they need.
We cannot wait to see more of the work Jamie does to advocate in her community. We know that Jamie and Titus will never give up on themselves or others, and TJC is thankful to know them because of that.