Myelomeningocele is a form of spina bifida. This birth defect can affect many different areas of a child’s health, including their cognitive skills, bowel and bladder function, fine and gross motor skills, sleep, vision, hearing and more. At Dayton Children’s, we provide these children with comprehensive, multidisciplinary care to help them enjoy the best quality of life possible.
Children with myelomeningocele often have surgery soon after birth to correct the defect, then spend some time in the newborn intensive care unit (NICU) at Dayton Children’s. If your child stays in our NICU, one of our nurses will come by to visit and talk with you. They will share educational materials and explain the many ways that our clinic can provide support and care in the years to come. The nurse will make sure your child receives the services he or she needs in a well-coordinated way.
Our services include:
- Providing developmentally appropriate care as your child grows
- Managing medical equipment needs for children who use assistive devices (wheelchairs, walkers, braces, etc.) This includes doing equipment evaluations and ordering the equipment that is best suited to your child’s needs.
- Physical or occupational therapy to help your child be as mobile and independent as possible
- Speech therapy to help your child with any speech or swallowing difficulties
- Spasticity management
- Nutritional care
- Referrals to specialists at Dayton Children’s and other providers to treat any problems associated with your child’s condition, including problems with sleeping, vision, hearing, reproductive health and more
- Social work services, to help families access community resources
- Genetic counseling
- Prenatal consults for families that know their child will be born with myelomeningocele
- Documentation and support to ensure children receive the services they need at school
- Pet therapy with our canine friends
- Assistance with transitioning to adult care providers
your child’s first appointment
Your child’s first visit to the myelomeningocele clinic will last from two to four hours. Please be sure to bring diapers, formula, snacks and a favorite toy or other familiar item from home. Also, bring along a list of questions you would like to ask our team.
During this appointment, you and your child will remain in one of our exam rooms, and our specialists will come in to perform thorough evaluations. At the end of the appointment, you will receive written notes about your visit and our initial recommendations. Later, after our team has an opportunity to talk more about your child’s needs, you will receive a comprehensive, written treatment plan.
We will also talk with you about applying for coverage through the State of Ohio’s Children with Medical Handicaps Program (BCMH). This program serves children with special health care needs by providing care coordination and supplementary insurance coverage.
We will schedule your child’s next appointment at the end of this initial evaluation. Our team will coordinate your child’s care and make adjustments to the treatment plan as needed.
Because myelomeningocele is such a complex disease, follow-up appointments can be very long and involved. In addition to monitoring your child’s overall health, we spend a lot of time addressing any rehabilitation or medical equipment needs. We also talk about how your child is doing with activities of daily life and at school. If your child needs care from another specialist, we will make a referral.
For the first year of life, we like to see patients every three months, and begin every six months after that until the child is about four years old. At this point, appointments may be scheduled annually, depending on your child’s needs.
The Spina Bifida Association serves adults and children who live with the challenges of spina bifida, offering education, advocacy, research and support.