For Damarion, Spina Bifida Became a Manageable Condition Thanks to CDTC Intervention

As she prepared to give birth to her son, Damarion, nearly 15 years ago, Keisha Jackson was scared. Her doctors had warned her of the possibility he could be born with spina bifida, a spinal condition that can range from very mild to very severe and can cause a range of physical and intellectual disabilities.

In the delivery room, Keisha’s mind was racing. As his spina bifida diagnosis was confirmed, she knew what Damarion would be facing. He was also diagnosed with hydrocephalus, a condition in which excess cerebrospinal fluid builds up within the fluid-containing cavities or ventricles of the brain that requires a ventriculoperitoneal (VP) shunt to drain it off and prevent seizures, a common side effect of hydrocephalus.

At just one day old, Damarion had his first surgery, beginning a grueling repair process to stem the damage to his tiny growing body. On day two of his life, he underwent another surgery to install the VP shunt in his head. 

When Damarion was finally discharged, Keisha went home with reassurance that she wouldn’t be alone in navigating his complex care. Her Broward Health physician had already lined up specialists Damarion would need for his ongoing recovery, including neurologists, urologists, orthopedics, physical therapists and nutritionists.

Keisha was also introduced to the ECHO program at Children’s Diagnostic & Treatment Center (CDTC), which gave her access to nurses and social workers who are trained to support optimal health and well-being for children and youth like Damarion with special health care needs by providing family-centered, comprehensive prevention, intervention and treatment services within a medical home environment.

Since his birth, Damarion has had six surgeries, the most recent of which straightened one of his legs damaged by his condition. Another operation repaired his VP shunt and required significant post-operative recovery.

“Yvonne Gamble, our health educator, comes to the house regularly to check on him to see if he needs anything,” Keisha explained. “CDTC social workers also help me manage his doctor’s appointments, which are the most difficult to keep up with.”

According to the U.S. Centers for Disease Control and Prevention, spina bifida can occur anywhere along a baby’s spine during gestation if his or her neural tube does not completely close before birth. When that happens, the backbone that would normally protect the spinal cord doesn’t form and close as it should, which often results in further neural damage.

At 14 years old, thanks to CDTC’s intervention and his diligent focus on becoming more independent, Damarion lives a near-normal life as an eighth-grade student at Dillard High School. 

In addition to Yvonne, Damarion has a strong team overseeing his overall well-being and care including his CDTC primary care physician, Dr. Lisa-Gaye Robinson, his mother and his great-grandmother.

Damarion’s cheerful, positive attitude and great sense of humor makes it nearly impossible to tell anything is outwardly different with him, except for the braces on his legs. He doesn’t let those braces or anything else stand in his way. Damarion goes to the beach, the movies and his favorite restaurant, McDonald’s, together with his mom and brothers, Marvin and Martavious. He’s even played wheelchair basketball as part of an annual league.

“I’m so relieved now, because CDTC has made it so much easier for me,” Keisha said.  “Damarion still needs assistance with things, but I’m so happy now that he’s doing so much better!”