Getting a spina bifida diagnosis during pregnancy — or finding out anything is wrong with your baby — can be devastating. It can feel like everything, all your hopes and dreams for your child, have been turned upside down. It’s scary, saddening and frustrating. It's likely you're facing decisions you never imagined you’d face, and it's normal to be unsure of where to turn for help.
You are not alone with a spina bifida diagnosis
This article can help you wade through questions and concerns you may have and provide guidance on where to go from here.
- Know that above all else, this is not your fault. You can have the healthiest pregnancy and no family history of spina bifida and still have a baby with the condition.
- Be patient with your loved ones and with yourself. Everyone reacts differently to the diagnosis.
Get help from the right fetal specialists
There may be more to the diagnosis than your doctor initially presented to you. An experienced team at a specialized fetal diagnosis and treatment center can add greater precision to the diagnosis, determine the severity of the condition, and offer a range of treatment options, including prenatal treatment. Fetal surgery for myelomeningocele, the most severe form of spina bifida, is shown to offer significantly better results than traditional repair after birth.
Things you should look for in a fetal treatment center:
- Experience. How long has the team been diagnosing and treating spina bifida and how many surgeries have they done to repair spina bifida before birth?
- Reported volumes and outcomes data, especially long-term outcomes.
- The ability to care for both mom and baby at the same place so that the baby does not have to be transferred to another hospital after delivery.
- Full range of treatment options before and after birth.
- A delivery unit and level 3 NICU within the hospital.
- A dedicated spina bifida program available for long-term follow-up.
- A team of social workers and other support staff who can help with relocation logistics, lodging, travel, counseling, etc.
- The ability to connect you with former patients who have had the same diagnosis and/or chosen the same treatment. (Read stories of spina bifida patients treated at CHOP.)
“Babies with special needs require very specialized and experienced care, both before and after birth — and so do their mothers," says Julie S. Moldenhauer, MD, maternal-fetal medicine/reproductive genetics specialist, Medical Director of the Garbose Family Special Delivery Unit, and Director of Obstetrical Services in the Center for Fetal Diagnosis and Treatment at Children’s Hospital of Philadelphia, when speaking about fetal surgery performed on a spina bifida patient named Miah in 2017.
Trust your instincts
You’ll know you’ve found a treatment center you can rely on from the first phone call. The fetal therapy nurse coordinator who takes your call should explain spina bifida from head to toe, and give you an overview of exactly what to expect on the day of your evaluation. The coordinator can help with things from travel to insurance.
They can also connect you to other families facing similar choices at the same time, as well as families who have been through the center, and may have an older child, even a teenager. You shouldn’t feel rushed into anything. After the call, you should feel comforted and informed.
“A lot of moms say, ‘I don’t even know where to start,’” says Lori Howell, DNP, MS, RN, Executive Director of Children’s Hospital of Philadelphia’s Center for Fetal Diagnosis and Treatment. “We say, ‘You’ve already started. We’re going to help you through everything else.’”
Think about your child’s long-term care
Choosing a hospital with the right fetal treatment center is an important start. Children born with spina bifida require lifelong follow-up care from a multidisciplinary team. Make sure the hospital you choose for your fetal care has the resources to care for your child immediately after birth and well beyond, and that they collaborate with your local spina bifida programs.
Educate yourself about spina bifida
The experts at the fetal center you choose are the best source for this information. If you’re searching for information online, stick with reliable sources, like hospital websites, March of Dimes and Spina Bifida Association.
Questions to ask when your baby is diagnosed with spina bifida:
See a full list of questions to ask when choosing a fetal treatment center. At the end of your evaluation, you should know the functional level of lesion, the potential outcome based on that level, and if you and your baby are candidates for fetal surgery.
What else should I know about spina bifida?
- Understand the difference between open fetal surgery and fetoscopic (also known as endoscopic) surgery and the benefits and risks of both.
- Spina bifida is a “snowflake condition.” This means no two people are affected exactly the same way. A child born with spina bifida may need braces, a walker or a wheelchair to get around, or they may not need any assistance. A child may need to use a catheter to go to the bathroom, or they may not. A child may need a shunt — a device implanted in the brain to relieve pressure caused by fluid accumulation — or they may not. Take it one day at a time and lean on your medical team and support system to help you face each step.
- Spina bifida is not fatal. There is no cure for the condition, but with advances in prenatal (before birth) and postnatal (after birth) treatments, the quality of life for children with spina bifida has changed dramatically over the past 50 years.
- Kids with spina bifida can live long, very happy lives. For many expectant parents, their first questions are often:
- Can babies born with spina bifida walk?
- What will my child’s life be like?
- What does spina bifida mean for my child’s future?
Children born with spina bifida may have some obstacles, especially in regard to walking and urinary/bowel issues, but overall, they will be more like other kids than they will be different. Many can walk — with or without assistance — run and jump, participate in sports, go to college, marry and have children.