What is spina bifida?
Spina bifida means that the bones that protect the spinal cord have not formed completely while a baby is developing in the mother’s womb. This happens very early in pregnancy.
Spina bifida can happen anywhere along a baby’s back between the head and the hips. It happens most often in the lower back. This area is called the lumbar or lumbosacral spine.
Children with spina bifida may have health problems because of this condition. They may experience changes or loss of feeling in their legs, have decreased movement of their legs or not be able to move their legs at all. They may also have problems with their bladder and bowel function.
About 2.6 in every 10,000 babies are born with some form of spina bifida.
There are four common types of spina bifida: Myelomeningocele, meningocele, lipomyelomeningocele and spina bifida occulta.
Babies with myelomeningocele or meningocele are both treated with surgery. Older infants and young children with lipomyelomeningocele may require surgery if they develop symptoms. Spina bifida occulta does not usually require treatment.
To learn more about the different types of spina bifida, how it is diagnosed and the complications associated with it please read: Spina bifida.
Many people will help look after your baby
There is a big team of people who will be caring for your baby:
- a neurosurgeon, who will do your baby’s surgery
- a paediatrician, a doctor who will give healthy baby care
- a urologist, a doctor who will care for your baby’s kidneys and bladder
- an orthopaedic surgeon, who will care for your baby’s bones
- a nurse, who will care for your baby day to day
- a nurse practitioner, who will help to co-ordinate care and services
- a physiotherapist, who will give your baby exercises to strengthen the legs and feet
- an occupational therapist, who will help with feeding and your baby’s development
- a social worker, who will help you cope with hospitalization and being a new parent
Meningocele and myelomeningocele are usually repaired with surgery
Surgery before your baby is born
Sometimes when a baby is diagnosed with spina bifida, specifically with myelomeningocele, surgery may be possible before the 26 week of pregnancy. This is done by opening the mother’s uterus and repairing the baby’s spinal cord defect while they are still in the womb. There are some studies that suggest this type of surgery stops damage to the spinal cord from getting any worse and decreases the possibility of needing treatment for hydrocephalus. Your neurosurgeon and obstetrician will tell you if this is an option for you and your baby.
Surgery after your baby is born
If your baby has been diagnosed with spina bifida during pregnancy, you may need to deliver at a high-risk pregnancy centre. Your obstetrician will tell you if this is needed. After delivery, the sac cannot stay outside of the body for a long time. It may tear or get infected, or it may already be ruptured exposing its delicate contents. Your baby will have surgery to repair the sac within two or three days of birth. A neurosurgeon will do the operation. A neurosurgeon is a doctor who operates on the brain and spinal cord.
Your baby may need an MRI before their operation to help the surgeons to better see the spinal cord. An MRI is a scan that takes special pictures of the inside of the body. An MRI scan requires a person to be still while the pictures are being taken. Some children may need medicine to help them keep still during the tests.
The purpose of the operation is to:
- close the skin over the sac
- prevent infection and further damage to the spinal cord
If your baby’s legs and feet are paralyzed or have decreased movement, the operation will not return movement and feeling to the baby’s legs and feet.
What happens after the surgery?
The surgery takes about four hours. After the operation, your baby will spend three to four hours in the Post Anaesthetic Care Unit (PACU) to recover from the anaesthetic (sleep medicine). Then your baby may go back to the neurosurgical unit, or they may be monitored in the NICU (neonatal intensive care unit).
Your child will have a bandage on their back for a number of days, depending on how the incision is healing. The nurse will check the bandage often. The nurse will also check your child’s temperature, heart rate, blood pressure, breathing, leg movements and level of pain.
Your child will also have a thin tube in their arm. This is called an intravenous (IV) tube. It lets your child receive fluids and medicines directly into their bloodstream. Your child will have this IV in place until they are feeding well and no longer requiring medication through it.
For the first three to five days after surgery, your child needs to lie flat in bed usually on their stomach. This is to prevent fluid around the spinal cord from leaking out through the incision. Do not get your baby up until you are given the go ahead. The team can assist you with holding and cuddling your baby for feeding and providing comfort. Once the incision is healed your baby will be able to be positioned normally.
Your baby may feel pain at the site of their operation. They will receive medicine to control the pain. If it does not control the pain, speak to your child’s nurse or a member of their health-care team.
When your baby is stable and alert after their surgery they will be able to feed. The team will be able to help support you with breastfeeding if that is your feeding method of choice.
To ensure that your baby empties their bladder, a catheter will be put into their bladder through their urethra every few hours. How often this happens may be decreased over time depending on your baby’s ability to pee on their own.
Babies with spina bifida that require surgery nearly always have a Chiari Malformation type 2. Because of this, they will be monitored for any issues with feeding or breathing.
Complication after surgery
After surgery the incision is monitored closely for signs of the wound reopening or any leakage of CSF. Depending on the size of your baby and the size of the defect, closure of the opening may have been difficult. The incision is fragile and there could possibly be issues with healing. The incision will need to be watched closely and may need some additional care such as special dressings.
Infection is possible with any surgery. Because your baby’s CSF and spinal cord is involved your baby will be closely monitored for any signs of infection. If infection is suspected the team will explain to you what treatment your baby will need.
After their back surgery to close the defect, babies with spina bifida often have extra CSF around their brain and spinal cord. This is called hydrocephalus. About 80 percent of baby’s with spina bifida, primarily those with myelomeningoceles, develop hydrocephalus. Hydrocephalus is treated with an operation that puts a tube called a shunt into the ventricles of the brain. This tube helps to drain CSF from your baby's head into an area where the CSF is better absorbed, such as the lining of the abdomen (tummy).
To watch for hydrocephalus your baby's head circumference will be measured often and they will also have ultrasound imaging done of their brain.
Some babies will have issues because they have a Chiari malformation. They may have feeding difficulties, breathing troubles and some weakness of their arms. Some babies may require other health-care team members to assist with these issues. For example, they may require an occupational therapist to help with position or type of nipple for feeding, or a respiratory doctor because they need oxygen support. Some babies may require surgery to decrease the pressure on the lower part of the brain caused by the Chiari malformation.
Before you take your baby home, your health-care team will explain how to take care of your baby at home. The instructions will include:
- how to take care of your baby’s incision
- what to do with your baby’s stitches
- how to tell if your baby’s incision becomes infected
- other things to watch for
- what activities your baby is able to do
- who your contact is if you have any questions or concerns
Taking care of your baby’s incision
Watch your baby’s incision to make sure it is healing well. Your health-care team will discuss with you how long to wait before your baby can have a bath. It is OK to let the incision get wet once your baby is ready for bathing.
Taking care of your baby’s stitches
Your baby might have stitches or surgical glue to close their incision. Your health-care team will tell you what type of stitches were used.
Your neurosurgery or plastic surgery team member will remove any stitches that need to be taken out.
- If your baby has stitches that need to be removed, you will be given an appointment for when you should return to have them removed
- If your child has stitches that dissolve on their own, the stitches will not need to be removed. You can still see your family doctor to have the incision line checked.
Watching for signs of infection
Tell your child’s doctor if you notice any of the following signs of infection:
- fluid leaking from the incision
- fluid collection (bulging) at the incision
- smelly discharge from the incision
When to see a doctor
If you see any signs of infection or any leakage of fluid from the incision then your baby needs to be assessed and should be brought to a local emergency department. Please be sure to notify your neurosurgical team of any concerns.
If your baby has hydrocephalus and/or a Chiari malformation type 2 please refer to those pages for when to seek medical attention.
Following up after the operation
The surgeon will see your child in a follow-up clinic visit four to six weeks after your child goes home after surgery. The appointment may be made for you when your child is discharged. Your child may need to visit sooner if stitches need to be removed or if the incision needs to be followed more closely.
There are many resources available to help you and your baby cope with spina bifida.
Spina Bifida and Hydrocephalus Association of Ontario
Holland Bloorview Kids Rehabilitation Hospital
- Spina bifida means that the bones that protect the spinal cord have not formed completely.
- In babies with spina bifida, the CSF, the nerves and the lining of the spinal cord often bulge out through a defect in the baby’s back.
- Two types of spina bifida, meningocele and myelomeningocele, are usually repaired with surgery
- Surgery will be done either before your baby is born, before the 26 week of pregnancy, or within two to three days after they are born.