According to a recent article from UTHealth Houston, a five-year-old suffering from a severe case of spina bifida has brought together a number of doctors to give her the best quality of life.
Spina bifida, which literally means “cleft spine,” occurs when the neural tube, a layer of cells that develops into the brain and spinal cord, does not close completely during the first month of embryonic development. Because of this, the bones of the spinal column (vertebrae) do not close completely around the developing nerves of the spinal cord, leaving a portion of it exposed. Part of the spinal cord may protrude through an opening in the spine, which leads to nerve damage. While the spinal opening can be surgically repaired after birth, the nerve damage is permanent, resulting in varying degrees of paralysis in the lower limbs. Spina bifida is usually present at birth, though it can occasionally start causing symptoms during adolescence. About 1 in 2,500 babies are affected worldwide. There are various forms of spina bifida.
Symptoms vary widely depending on the extent of the defect in the spine. They can include:
- Fluid-filled sac on their back that protrudes from the spinal canal
- If it is covered by skin, it is called a meningocele.
- If the sac contains parts of the spinal cord and its protective covering, and has no layer of skin covering it, it is called a myelomeningocele.
- Difficulty controlling bladder
- Presence of a dimple or tuft of hair on the back over the affected area
- Paralysis in lower limbs
- Difficulty walking
- Intellectual disability
- Hydrocephalus (in which there is too much cerebrospinal fluid in the brain)
Kaylie was diagnosed with spina bifida when she was still in the womb. After being born, she immediately underwent a surgery to repair part of her spinal cord. This would be just the start of her medical journey.
Kaylie’s case is one that is considered quite severe. She deals with hydrocephalus (excess fluid in her skull), craniosynostosis (misshapen skull), scoliosis, and chronic hip dysplasia. In addition, she is prone to seizures and only has one kidney.
Kaylie is a very complex case, and therefore she has a vast team of doctors helping her in leading a happy life. This team includes a pediatric neurosurgeon, pediatric plastic surgeon, and a pediatric orthopedic surgeon. Despite their different specialties, these surgeons collaborated with each other to give Kaylie the best care. They recognize that with her various conditions, her needs will constantly be evolving. Therefore, they need to work together to watch how she’s progressing and come up with new plans.
Patients with spina bifida often have multiple doctors and surgeons in charge of their care. Kaylie’s case is not the first time some of these surgeons have worked together on a spina bifida case. As one of Kaylie’s doctors, pediatric plastic surgeon Matthew Grieves, MD, says:
“The goal with any of our surgeries for patients with multiple medical problems tied to spina bifida is to focus on improving their quality of life.”
Kaylie Inspires Her Medical Team
Members of Kaylie’s team have noted that despite all the hardship she endures, she is still a happy and extroverted child. She is not letting her diagnosis’ get in the way of living an exciting life and comes to every appointment with a smile on her face. Kaylie has even spread awareness about her condition. She has participated in a spina bifida awareness Christmas parade, been featured in various promotional materials for the spina bifida clinic, and educates others about the effects of spina bifida in children.