Spina bifida

Evidence 

https://www.sciencedirect.com/science/article/abs/pii/S1751721419302076  

Adalina Sacco,  Dominic N.P.Thompson,  Fred Ushakov, Anna L.David,  Jan Deprest 

Spina bifida is a neurological condition caused by incomplete closure of the neural tube in the first four weeks of gestation, leading to a defect in the bony spine through which the spinal cord is exposed. 

Education 

Spina bifida happens when a baby’s spine does not fully close during pregnancy. This can affect the nerves and how the body works. Every baby with spina bifida is different—some may have mild issues, while others need extra care. 

There are different types of Spina bifida: 

• Spina bifida occulta – This is the mildest form and may not cause any problems.  

• Meningocele – A small sac of fluid pushes through an opening in the spine, but the nerves are usually not damaged. 

• Myelomeningocele – This is the most serious form where the spinal cord and nerves are in the sac outside the baby’s back. This can cause problems with movement, bladder and bowel control. 

Doctors don’t know exactly what causes spina bifida, but taking folic acid before and during pregnancy can help lower the risk. 

Spina bifida can sometimes be found during pregnancy through: 

• Ultrasound – A routine scan around 18–20 weeks can show if there are any signs of spina bifida. 

• Blood tests – A test called maternal serum alpha-fetoprotein (AFP) can look for signs of neural tube defects, including spina bifida. 

• Further testing – If needed, doctors may suggest extra scans or an amniocentesis to confirm the diagnosis. 

What Happens Next?  

If your baby is diagnosed with spina bifida before birth, you will have support from a team of specialists, including doctors and counsellors. They will talk to you about your options and help you understand what to expect. 

For some babies, doctors may suggest fetal surgery, where they operate before birth to help protect the baby’s spinal cord. This is not always possible; the risks and benefits will be carefully discussed with you. 

No matter the diagnosis, you are not alone. There are many support groups and healthcare professionals who can guide you through this journey. 

Empowerment 

Receiving a diagnosis of spina bifida can feel overwhelming, but you are not alone. Many families have been through this and have found the right support to help their child thrive. 

• Ask Questions – It’s okay to have lots of questions. Your healthcare team are there to provide answers and guidance. 

• Connect with Support Groups – Speaking with other parents who have had similar experiences can be comforting and helpful. 

• Plan for Your Baby’s Needs – Learning about spina bifida and talking to specialists can help you prepare for your baby’s arrival and care. 

• Take Care of Yourself – This is a big journey, and looking after your own well-being is important too. Seeking support and taking time for yourself can make a big difference. 

Remember, many children with spina bifida go on to live happy and fulfilling lives. With the right care, support, and early interventions, your baby can reach their full potential. You are your baby’s biggest advocate, and you are not alone on this journey. 

Useful Links  

Pregnancy Birth and Baby 

https://www.pregnancybirthbaby.org.au/spina-bifida 

The Royal Women’s Hospital, Victoria 

https://www.thewomens.org.au/health-information/pregnancy-and-birth/now-you-are-pregnant/genetic-testing-in-pregnancy 

Connect Ability Australia  

https://www.connectability.org.au/the-facts-on-spina-bifida/