On Friday, Oct. 25, Atascosa-McMullen Coop staff gathered at the Sports Complex for their first ever Spina Bifida Day Walk-n-Roll.
The event raised awareness of spina bifida, a birth defect that occurs when an area of an unborn baby’s spine does not form properly in the womb, exposing a section of the spinal cord and spinal nerves. The staff walked in honor of Alex Castillo IV, the 11-month-old son of Alex Castillo III and Sasha Castillo, ARD Facilitator at the co-op.
The event was organized by Lynse Pawelek, Pleasanton ISD Executive Director for Special Education. It was held in conjunction with a nationwide Walk-n- Roll campaign.
With Alex in his stroller, the Castillo family led the walk around the Sports Complex, with most of the group wearing teal and shades of blue. They were also joined by Alex’s mother Charlie Castillo and Sasha’s mother, Elizabeth Rodriguez.
Throughout Spina Bifida Awareness Month in October, Sasha shared spina bifida facts and statistics on Facebook.
There are four types of spina bifida and baby Alex has myelomeningocele, the most common and most severe form. Other forms are meningocele, myeloschisis and spina bifida occulta.
One of the facts Sasha shared about spina bifida is that while there is no cure, people with spina bifida survive and thrive. This is made evident by baby Alex.
The Castillos would like people to know that spina bifida is not a death sentence.
“There is help and medical care available that can greatly improve their outcomes, because he seems to be doing great. Typically, spina bifida is not repaired until after they are born,” said Alex.
When Sasha was pregnant at 25 weeks, doctors performed an in-utero procedure on baby Alex. As Alex explained, in spina bifida the spine doesn’t form correctly.
“The nerves and spinal cord are not protected by the spine at the site of the lesion but are actually still enclosed by a thin layer of tissue on their back,” said Alex.
The spinal cord and nerves being exposed to the amniotic fluid, through the thin membrane, results in nerve damage. Different sections of our spine coordinate to different sections of the body. Therefore, the parts of the body affected depends on where the lesion is at on their spine, explained Alex.
Alex’s lesion is located in the low lumbar area which typically affects the bowel and/or bladder and leg muscles. At this time, Alex does not have any bowel or bladder issues, but does attend weekly therapy sessions to help improve and strengthen motor function.
“We learned that the longer a baby is exposed to the amniotic fluid, the greater chance there is for more damage to occur. The in-utero procedure is a new procedure in respect to treating Spina Bifida. The surgeons that performed the procedure are actually the same doctors that first brought this procedure to Memorial Hermann and have performed all in utero repairs so far. If I do recall correctly, we were number 89,” said Alex.
Sasha added that the procedure is based on the MOMS trial, which stands for Management of Myelomeningocele Study (MOMS).
The study compared the outcomes of in utero repair vs. standard postnatal repair.
According to the New England Journal of Medicine, the study concluded that prenatal surgery for myelomeningocele reduced the need for shunting and improved motor outcomes at 30 months, but was associated with maternal and fetal risks. It was funded by the National Institutes of Health.
Although much like a C-section, the operation is performed with the mother under general anesthesia. The fetus, however, is not removed from the uterus. An incision is made in the mother’s abdomen and a smaller incision is then made in the uterus, just large enough for the spinal defect to be operated on.
The defect is surgically repaired by the pediatric neurosurgeon. After the procedure, the amniotic fluid that is lost is replaced with sterile fluid and the incisions in the uterus and the mother’s abdomen are closed, according to the Fetal Center at Children’s Memorial Hermann Hospital in Houston.
There are requirements to qualify for fetal surgery such as: MRI, genetic counseling, meeting with several specialists and more.
“There are definitely advantages to having the closure done in-utero and just because a kid is diagnosed with spina bifida, doesn’t mean that they can’t do anything or live a normal life,” said Alex.
“Spina bifida looks different for everybody, there are persons with Spina Bifida who walk independently, some walk with assistive devices, and others utilize wheelchairs. Some have shunts, others have bowel and bladder problems, and we believe that Alex has benefitted from fetal surgery,” said Sasha.
“It was really stressful. It was a lot to go through, but it was worth it,” said Alex.