October is National Spina Bifida Awareness Month and a time to be advocates for people diagnosed with this condition and to learn how the multi-disciplinary team approach at Gillette Children's Specialty Healthcare helps children and adults who have spina bifida thrive.
Rehabilitation Medicine Physician, Linda Krach, MD, says she’s “spoiled” by working at Gillette. “We have such a strong and large team of experts at Gillette I can truly give my patients the very best care,” Krach says.
“For example, if I think a person who has spina bifida would benefit from having a seating expert come in and make some adjustments to make them more comfortable I just pick up the phone and a seating expert shows up right away. I don’t need to tell the family to schedule another appointment or wait for help. We have the staff to take care of these needs immediately and that feels great.”
This multi-disciplinary, team approach is part of the Gillette care model. It means clinical experts from many areas take care of a individual’s needs at once, often during one visit. This clinically integrated care model helps those with spina bifida achieve the best outcome and is helpful to families.
Gillette helps parents and providers make a plan for each child
Spina bifida is fairly common, occurring in one of every 1,500 births, and is a complex condition that requires a team of experts to make sure each child can thrive.
Spina bifida is a group of congenital disabilities (a disability that is present at birth) that affects occurs when the spinal column does not close completely. A baby who has the most severe form of spina bifida will be born with part of the spinal cord outside of the body. A child with mild spina bifida might not exhibit many symptoms.
Children are often diagnosed with spina bifida before birth, in the second trimester of a pregnancy. Krach says there are three ways to diagnose prenatally. The first way is during an Alpha-fetoprotein screening during the 16th to 18th week of pregnancy. This level is elevated in about 75% of women who have a fetus with spina bifida.
The second method of diagnosis is an ultrasound that might show a fetus with an open spine. The third way is to examine maternal amniocentesis to look at protein levels.
A team of Gillette specialists, including neurologists, orthopedic surgeons, urologists, rehabilitation medicine specialists, therapists, psychologists, social workers, and orthotists is ready to help parents and referring providers create a treatment plan especially designed for each child diagnosed with spina bifida.
The rehabilitation team works together to provide therapies to help a child gain strength and independence. Some children, teens and adults might need equipment such as wheelchairs, seating systems, walkers and orthoses to help with mobility. The Gillette orthotics, prosthetics and seating practitioners are experts in finding the right equipment for each person.
Spina bifida has levels of medical complexity
Spina bifida is a condition with levels of medical complexity and does not affect all people in the same way. Spina bifida occulta often has no symptoms. An x-ray shows one of more vertebrae with incomplete formation. Some children who have this type of spina bifida have pain and neurologic symptoms and might have a tethered spinal cord. Babies born with spina bifida occulta often have normal function at birth but sometimes experience problems later.
Another type is meningocele- a sac protruding through the spinal column defect with spinal fluid and meninges but no neural tissue. Usually there is no nerve damage and children diagnosed with this type of spina bifida might have minor disabilities.
One of the more severe forms of spina bifida is Myelomeningocele which is called open spina bifida or an open neural tube defect. Babies born with Myelomeningocele have a sac containing an abnormally formed spinal cord that pushes out from an opening in the spinal column in the back. The nerves at and below the affected area are damaged or completely absent. This causes weakness or paralysis along with bowel and bladder complications. Babies need surgery shortly after birth to repair the affected area. Myelomeningocele is associated with neurologic impairment and is commonly associated with hydrocephalus—or “water on the brain.” Hydrocephalus might require surgery to help manage the condition.
Optimizing each child's function
Krach says there are many misconceptions about spina bifida. “When people hear someone is diagnosed with spina bifida they tend to make assumptions about that child’s future and what kind of life or job they might have.” She wants to assure parents that with the proper care their child can lead a very full life.
“I have a long history as a rehabilitation medicine doctor taking care of many patients over the years,” Krach recalls. “One of the wonderful things about my current clinical activity is that I am now seeing adults who I had the opportunity to provide care for when they were children. Having this long-term perspective is great. I also appreciate that Gillette gives me the opportunity to participate in clinical research. I’m learning more about the effects of the interventions that we provide.”
Krach and the team at Gillette appreciate working with patients over the long term. “I enjoy working with the Gillette team and parents to understand a child’s needs and to work on optimizing that child’s function,” Krach says.
To make an appointment for spina bifida care at Gillette Children's Specialty Healthcare please call 651-290-8707. Referring providers can contact Gillette for a consultation or to refer a patient by calling 651-325-2200.