Antenatal counselling for spina bifida

Antenatal counselling is a meeting you may have with your doctors during your pregnancy to discuss your unborn baby’s health.

Spina bifida can be diagnosed before your baby is born. Ultrasounds will show the condition of your baby’s developing spine and whether they have spina bifida. If they do, you’ll be referred to a specialised maternity unit where another ultrasound may take place to make absolutely sure the condition is present. If it’s clear from the ultrasound that your baby has spina bifida, a specialised obstetrician (Maternal Fetal Medicine Specialist) and their team will discuss their findings and what it means for you and your baby.

Your obstetrician may then refer you to the Spinal Disabilities Clinic at the Queensland Children’s Hospital for an antenatal counselling appointment.

What to expect from antenatal counselling for spina bifida

You will continue to receive care from your obstetric team but will also meet the Spinal Disabilities team for additional support and information.

The Spinal Disabilities team may want to confirm your baby’s diagnosis for themselves, and in that case, you’ll be referred by your obstetrician for a fetal MRI before your counselling appointment at Queensland Children’s Hospital.  The MRI will confirm the previous results and provide additional information about your baby’s spine and brain development.

At your hospital appointment, you will meet with a paediatrician and a neurosurgeon who specialise in caring for children with spinal cord differences such as spina bifida. During the session, the doctors will discuss your ultrasound and MRI findings and talk to you about how these might impact your child and their development.

The aim of antenatal counselling for spina bifida

• Give you essential information about the diagnosis so you can make plans and decisions with more confidence.
• Help families prepare for the medical and surgical procedures that may be required after birth.
• Explain, where possible, how children will be affected by the diagnosis over time.

When to expect your antenatal counselling session

The Spinal Disabilities clinical nurse will call you with an appointment date and time once we receive your referral. Our clinics run fortnightly on Friday mornings at the Queensland Children’s Hospital. You may benefit from bringing a support person with you when you attend this counselling appointment. A social worker is also available to provide emotional and practical support during and after your appointment.

In-utero (antenatal) surgery and spina bifida

Surgery to close the lesion on the baby’s back before it is born may be possible. In-utero surgery has been shown to reduce the chances of a baby needing a shunt to treat hydrocephalus (build-up of extra fluid around the brain). This surgery may be offered under very specific circumstances, and you will need to be referred to a specialist unit (Mater Centre for Maternal Fatal Medicine) who will determine if you meet criteria for the surgery.

Perinatal care – after counselling

It’s recommended that babies with spina bifida are born in a tertiary maternity unit with access to specialised care. The birth often needs more planning and the mode of birth with be discussed with your obstetrician.

After birth, your baby will be transferred to the Neonatal Intensive Care Unit (NICU). You’ll be able to visit your baby as soon as you’re able. If your baby has a type of spina bifida that requires surgery, then the surgery usually takes place in the first few days after birth to close the lesion and prevent infection and damage to the spine. Your baby will be monitored and will stay in hospital after their surgery until ready for discharge. This may be a few weeks.

During your pregnancy, your obstetrician will make an appointment for you to meet the Neonatologist (specialist baby doctor working in NICU). They will explain the medical care of your baby after birth and after surgery. A tour of the NICU may be arranged with the NICU nurses, who will talk to you more about the NICU environment, visiting hours and other detail you might find useful. You may also see a lactation consultant who will discuss expressing, pumping, and storing your milk until your baby is ready to breastfeed.

A doctor and physiotherapist from the Spinal Disabilities clinic at the Queensland Children’s Hospital will also aim to visit you and your baby whilst in hospital.

Once your baby has been discharged from hospital, the Spinal Disabilities team at the Queensland Children’s Hospital will support your family as your child grows and develops. Your first appointment with our team is typically scheduled for when your baby is 6 weeks old.

If your baby had in-utero surgery, then the team who performed the surgery will come and see your baby whilst you and your baby are still in hospital.

What happens next?

It’s important not to worry if you cannot remember everything spoken about at your antenatal counselling appointment, or if you have more questions later. You will see our team again and can call or email us if you have any questions or concerns.

Our team will visit you again after your baby is born. We will be able to discuss your baby’s condition with you more at that time.

For more information

• Fact sheets: Spina bifida - information, symptoms and treatment – www.childrens.health.qld.gov.au/health-a-to-z/spina-bifida

Developed by the Queensland Paediatric Rehabilitation Service Children’s Health Queensland’s Child and Child Health Service. We acknowledge the input of consumers and carers.

Resource ID: FS407.   Reviewed: July 2024

Disclaimer: This information has been produced by healthcare professionals as a guideline only and is intended to support, not replace, discussion with your child’s doctor or healthcare professionals. Information is updated regularly, so please check you are referring to the most recent version. Seek medical advice, as appropriate, for concerns regarding your child’s health.