Spina Bifida in an Unborn Fetus: Practical Coping Strategies for Parents
When spina bifida is detected in an unborn fetus, the world doesn’t stop-but everything changes. For parents, this moment isn’t just about medical facts. It’s about fear, grief, hope, and the urgent need to know: What do we do now? There’s no single right way to feel, but there are real, proven ways to move forward. This isn’t about statistics or surgical outcomes. It’s about what you can do, day by day, to prepare, connect, and find strength when the future feels uncertain.
Understand what spina bifida actually means
Spina bifida is a neural tube defect where the spine and spinal cord don’t form properly during early pregnancy. It’s not a disease you caught or caused. It’s not your fault. It’s a complex condition with three main types: occulta (mild, often unnoticed), meningocele (fluid-filled sac outside the spine), and myelomeningocele (the most severe, where nerves and tissue protrude). Most cases diagnosed prenatally are myelomeningocele. That’s the one that brings the biggest questions.
What does this mean for your baby? It might mean mobility challenges, bladder or bowel control issues, hydrocephalus (fluid on the brain), or learning differences. But it doesn’t mean a life without joy, connection, or achievement. Many children with spina bifida walk with braces, use wheelchairs, go to school, play sports, and grow into independent adults. The key is early intervention and consistent care.
Connect with specialists before birth
Don’t wait until your baby is born to start building a care team. By 20 weeks, you should be seeing a maternal-fetal medicine specialist, a pediatric neurologist, and a pediatric orthopedic surgeon. Some hospitals offer fetal care centers where all these experts meet together with you in one room. This isn’t just convenient-it’s life-changing. You’ll get a full picture of what to expect, what treatments are available, and how to plan for delivery.
In Australia, fetal surgery for spina bifida is available at major centers like the Royal Women’s Hospital in Melbourne and the Royal Brisbane and Women’s Hospital. The MOMS Trial, a landmark 2011 study, showed that prenatal surgery can reduce the need for shunts and improve motor outcomes. It’s not for everyone, but if you’re eligible, it’s one of the most powerful tools available. Ask your doctor if you qualify. If you don’t know what to ask, write down three questions: Is my baby a candidate for fetal surgery? What are the risks to me and the baby? What happens if we wait until after birth?
Prepare emotionally-your feelings matter
It’s okay to cry. It’s okay to feel angry. It’s okay to feel nothing at all. There’s no timeline for grief, and no ‘correct’ emotional response. What’s dangerous is pretending everything’s fine. Talk to someone. A counselor who specializes in perinatal loss or disability. A support group. Even if you’re not ready to speak, just sitting with others who’ve been there helps.
In Brisbane, the Spina Bifida Association of Australia runs monthly parent meetings. You’ll meet families who’ve walked this path. One mother told me, “I thought I was alone until I heard another parent say, ‘My baby’s 8 now and still loves soccer.’ That’s when I started breathing again.” You don’t need to be brave right now. You just need to be heard.
Learn the practical steps for after birth
Once your baby is born, the medical team will act fast. For myelomeningocele, surgery to close the opening is usually done within 24-48 hours. That’s standard. But beyond that, what comes next? Here’s what to expect:
- Neurosurgery for hydrocephalus-many babies need a shunt to drain fluid from the brain.
- Urology assessments-bladder function is monitored closely, often with catheterization routines.
- Orthopedics-foot deformities, hip dislocations, and scoliosis are common and managed with braces, casts, or later surgery.
- Physical and occupational therapy-starting as early as possible to build strength and independence.
Keep a notebook. Write down every doctor’s name, phone number, and what they said. You’ll forget details when you’re tired. You’ll also need this later when applying for government support like the NDIS (National Disability Insurance Scheme). In Australia, NDIS funding can cover therapy, equipment, home modifications, and even transport. Apply early-even before your baby is born, you can start the pre-approval process.
Build a support system-don’t go it alone
People mean well. “You’re so strong,” they say. “God doesn’t give you more than you can handle.” Those words don’t help. What helps is someone bringing soup. Someone watching your other kids while you rest. Someone who doesn’t flinch when your baby’s leg brace falls off at the supermarket.
Reach out to your partner, your parents, your friends. Say: “I need you to come over on Thursday. I don’t want to talk. I just want you here.” Most people want to help-they just don’t know how. Give them a job. Text: “Can you pick up groceries?” or “Can you sit with me while I cry?”
Also, connect with other parents. The Spina Bifida Association of Australia has an online forum. There’s a Facebook group called “Spina Bifida Parents Australia” with over 1,200 members. One dad posted, “I didn’t know how to change a catheter until I watched a video from another dad who’d been doing it for two years.” Real help comes from real people who’ve been there.
Focus on what you can control
There’s a lot you can’t control: the diagnosis, the surgery, the long-term outcomes. But you can control your actions today. You can learn how to hold your baby. You can read one article. You can call one support line. You can choose to rest instead of pushing through. You can say no to pity, yes to truth.
Take one small step every day. Today: call the NDIS. Tomorrow: download the Spina Bifida Australia app with care checklists. Next week: schedule a meeting with a pediatric occupational therapist. Progress isn’t linear. Some days you’ll feel strong. Other days you’ll feel broken. That’s normal. What matters is that you keep moving, even if it’s one tiny step.
Remember: your child is more than a diagnosis
Spina bifida is part of your child’s story-but it’s not the whole story. Your child will laugh. They’ll love music. They’ll have favorite toys. They’ll hate broccoli. They’ll ask for hugs. They’ll be curious. They’ll be stubborn. They’ll be yours.
One mother in Sydney told me, “My daughter’s 6. She can’t walk without her braces, but she climbs trees with her friends. She doesn’t see her legs as a problem. She sees them as part of her. And that’s what I’m learning too.”
Your job isn’t to fix your child. Your job is to love them. To see them. To stand beside them as they grow into who they’re meant to be.
Can spina bifida be cured before birth?
No, spina bifida cannot be cured before birth. But fetal surgery can significantly improve outcomes. Closing the spinal opening before delivery reduces the risk of hydrocephalus and improves leg movement in many cases. It’s not a cure, but it gives your child a better start.
What are the chances of having another baby with spina bifida?
If you’ve had one child with spina bifida, your risk of having another is about 2% to 5%. That’s higher than the general population (0.1%), but still low. Taking 4 milligrams of folic acid daily, starting at least three months before conception, can reduce that risk by up to 70%. Talk to your doctor about a higher-dose supplement.
Will my baby need a wheelchair?
It depends on where the spinal defect is located. Higher lesions (near the upper back) often mean more mobility challenges and a higher chance of needing a wheelchair. Lower lesions (toward the lower back or tailbone) may allow walking with braces or crutches. Many children use wheelchairs for long distances but walk at home or school. Mobility is highly individual and improves with therapy.
Can my baby be breastfed?
Absolutely. Breastfeeding is encouraged and possible for most babies with spina bifida. Some may need extra support due to muscle weakness or positioning challenges. A lactation consultant can help with special holds or feeding tools. The benefits-immune protection, bonding, easier digestion-are especially valuable for babies with complex health needs.
What government support is available in Australia?
The National Disability Insurance Scheme (NDIS) provides funding for therapies, equipment, home modifications, and transport. You can apply before your baby is born using a pre-approval form. Medicare also covers specialist visits, surgeries, and some medications. State-based programs like Queensland’s Early Childhood Early Intervention (ECEI) offer free support for children under 7. Don’t wait-start the process early.
Next steps: What to do right now
If you’re reading this because you’ve just been told your baby has spina bifida, here’s what to do in the next 48 hours:
- Write down all your questions and take them to your next appointment.
- Call the Spina Bifida Association of Australia (1300 137 888). They’ll send you a free parent pack with resources.
- Ask your doctor for a referral to a pediatric neurologist and a fetal medicine specialist.
- Start taking 4mg of folic acid daily if you plan to have more children.
- Reach out to one person you trust and say, “I need help.”
You are not alone. This journey is hard, but it’s not impossible. Your child will thrive-not in spite of spina bifida, but with the love, care, and support you’re already giving them.
Edward Jepson-Randall
I'm Nathaniel Herrington and I'm passionate about pharmaceuticals. I'm a research scientist at a pharmaceutical company, where I develop new treatments to help people cope with illnesses. I'm also involved in teaching, and I'm always looking for new ways to spread knowledge about the industry. In my spare time, I enjoy writing about medication, diseases, supplements and sharing my knowledge with the world.