By: Alireza Alam, MD, pediatric urologist
Spina Bifida is a birth defect that occurs when the spinal column doesn’t form or close properly before birth. It leaves a portion of the spinal cord and nerves exposed through an opening in the back. An estimated 1,500 babies are affected each year in the United States.
This in the development of a baby’s back affects the nervous system, bladder, bowels and movement of the patient. Patients can experience issues with mobility and walking, kidney dysfunction. They can also experience fluid accumulate on the brain, sleep disorders, skin problems and other conditions.
To treat these affected children and assist their families in managing the condition, Jackson Health System offers a Comprehensive Spina Bifida Program at Holtz Children’s Hospital at the University of Miami/Jackson Memorial Medical Center.
Dr. Alireza Alam, pediatric urologist, who helped develop Jackson’s program, explains how the hospital provides the most comprehensive care to these patients and their families.
What is the best way to treat Spina Bifida?
In order to give the best care possible, patients with Spina Bifida also need a multi-disciplinary team consisting of a pediatric urologist, pediatric neurosurgeon, pediatric orthopedic surgeon, pediatric nephrologist, general pediatrician, nurse and social worker to assist families in getting the resources they need to manage their condition.
The team decided to host the clinic to give patients the opportunity to receive all the care they need in one centralized setting. This is the best opportunity for families because they do not have to worry about going from place to place to see different providers; they can see every specialist in one day.
It is important to be proactive and not passive when treating patients. Many studies have shown that being proactive in managing the treatment of Spina Bifida patients, the chances of them needing to have a kidney transplant or developing other, more severe complications is very low.
Patients with more severe cases – known medically as meningocele and myelomeningocele – need to have surgery after they’re born. When the patients are discharged after surgery, we want them to begin coming to the clinic as soon as possible to see our entire team. Timing is important because the older patients get, the more difficulty we will have treating them. By then, the disease could have damaged their kidneys, and affected their mobility, including their ability to walk.
Are there any particular factors that put babies more at risk of being born with Spina Bifida?
Pregnant women who have a folate deficiency are at increased risk of having children with Spina Bifida. Folic acid, found in leafy green vegetables, is key to genetic formation. There are also congenital factors that are sometimes unknown which may play a role.
What is the age range of Spina Bifida patients seen at the clinic?
Patients can range in age from birth to 18 years old. Ideally, we would like to starts seeing patients from the time they are diagnosed because there is a better chance for successful treatment if it begins early.
Though we currently see patients who are age of 18, we’re trying to find a way to have a transitional clinic that will allow us to see them once they become adults. Spina Bifida is a disease that pediatric urologists are most familiar with so we can be great resources in an adult patient’s treatment also.
What advice would you give to parents whose children are diagnosed with Spina Bifida?
I want to emphasize again the importance of beginning treatment immediately after a diagnosis at birth. Even though our orthopaedic surgeons do a great job ambulating patients and helping them improve mobility, from a urology point of view, most patients will end up having catheterization to help with the bladder. If this is not done timely, other issues may arise.
Is there a certain life expectancy for Spina Bifida patients?
It depends on the condition of the patient. If they enter treatment very early, their life expectancy is very long. If they start late and have already developed some of the conditions and complications we talked about earlier, their life expectancy is not very good.
What about patients who are uninsured or underinsured? Can they come to the clinic?
Yes. Jackson has different programs that can help families qualify for charity care, depending of their financial need. In some cases, we also provide families with samples and supplies for one or two months until their insurance or financial assistance kicks in.
Is there anything else you would like to add about the Spina Bifida program?
I am very thankful to all of the team members that helped us build the Spina Bifida clinic at Jackson. It is very important that people are educated about this condition, and know that we are here to help children and families.
The spina bifida clinic meets every first Tuesday of the month from 1 – 4 p.m. To learn more about the Spina Bifida program visit www.jacksonhealth.org. To make an appointment call 305-585-3627.
Alireza Alam, MD, is an UHealth pediatric urologist, and helped develop the Comprehensive Spina Bifida program at Holtz Children’s Hospital.