Spina Bifida

Will I see my baby after he or she is born? Can I hold?

Whether you are able to hold your baby after birth depends on if the opening in your baby’s back is covered by skin or open. If it is open, special care must be done to protect the spinal cord from damage and to lower the risk of infection. Your baby will be gently cleaned, and the area of the back that is affected will be covered and protected immediately after birth. You will be able to have contact with your baby before he or she is transported to the Newborn Intensive Care Unit (NICU).

Can I breast feed my baby with spina bifida?

We do everything possible to encourage breast feeding. However, depending on the needs of your baby we may need you to provide pumped breast milk to promote healthy feeding for the baby. Our lactation consultants will work with you if you are interested.

How long will the baby be in the hospital after birth?

Every baby born with spina bifida is unique and has individual needs. But, on average babies will be in the NICU for about two weeks.

How many surgeries will my baby need?

Every baby is unique and we treat their needs as needed. Most of the early procedures are for the spina cord and brain. If the hole in the back is covered by skin, the surgery may be delayed depending on what your neurosurgery team feels is best. If open, it will be closed within the first 24-72 hours of life. About eight out of 10 babies with spina bifida will need closure of the back, and a tube (shunt) placed in the brain to drain the fluid (hydrocephalus). About 40-50% will need to have the shunt replaced during the first year of life.

If we want to have more children, what is my risk of having another baby born with spina bifida and can I do anything to lessen the risk?

Your OB/GYN and spina bifida team will recommend that you be on 4 mg of folic acid three to six months before your conceive your next child. While not perfect, it greatly reduces the risk of another baby having spina bifida.

Can I deliver my baby at my local hospital?

Babies with spina bifida should be delivered at a medical center that specializes in spina bifida so they can receive specialty care during after birth. By receiving care at a medical center specializing in spina bifida, it will be easier for the baby to have the best possible outcome. The Fetal Center at Riley at IU Health is equipped to deliver babies born with spina bifida.

Can I visit the NICU before delivery so I can better prepare?

Our NICU staff will be happy to give you and your family a tour of the NICU at Riley at IU Health so that you will see where your baby will be cared for and to learn more about the NICU. They will give you the basic information of the NICU such as:

• Visiting hours and guidelines for visits

• Where you can pump and store your breastmilk

• Supplies you should bring to the NICU and what the NICU provides

• Details for parking, meals and any other questions you have

What should I pack for my baby’s NICU stay?

We will supply diapers, breastmilk pump, formula (if needed), clothes and all medical supplies. You may want to bring personal items to decorate your baby’s NICU room. Please write your name on all things you bring to the NICU. The only necessary items to eventually bring for your baby are something to wear home and a car seat.

What specialists will treat my baby in the NICU?

Make sure you know who everyone is before they touch your baby. There will be many members of the care team involved in your baby's treatment. These may include:

• Neonatologists
• Urologists
• Neurosurgeons
• Developmental pediatricians
• Nurse practitioners
• Physical therapists
• Social workers
• Nurses
• Medical students, residents or fellows

This can be overwhelming and confusing until you figure out who makes decisions and is the best to answer your questions.

Can you tell me more about the people caring for my baby?

As you can see it takes many care team members to help manage your baby’s spina bifida. Here are the main care team leaders:

• Maternal-Fetal-Medicine doctor — this person will help manage your prenatal care, delivery of your baby and your post-partum care. You will most likely meet them during a prenatal conference.
• Neonatologists — this doctor takes over the care after your baby is born and will make daily rounds to check on the overall health and progress of the baby.
• Neurosurgeon — This doctor will close the hole in the back, place any shunts or tubes to drain excess pressure in the brain, and will be the person to ask about your baby’s neurological function.
• Urologist — this doctor will help to assess and monitor bladder and bowel function. They will do some tests to help determine if you will need to learn how to help your baby empty their bladder after you leave the NICU.
• Orthopedist — this doctor will help assess the baby for clubbed feet or other bone problems.
• Developmental Pediatrician — This doctor will visit to introduce the Spina Bifida Program at Riley at IU Health and describe what clinic visits are needed after you go home from the NICU.
• Nurse practitioners — this nurse has special training in neonatology and serves as an extender for the neonatologist. They will write most of the orders that control day-to-day care.
• NICU Nurses — these nurses play a critical role in your baby’s day-to-day care. They will help teach you how to safely take over routine care for your baby. If necessary, they will teach you how to help your baby empty their bladder if they are not able to do so themselves. You can ask your baby’s nurse for suggestions on how to navigate the Riley at IU Health and who you should direct your questions to when you have questions about your child’s care.
• Physical therapists — a therapist that will evaluate and provide range of motion exercises and stretches to help your baby move better. They will also provide guidance for early intervention services (First Steps program) after discharge.

How do I know that we are ready to go home?

We will want to make sure that the surgical site is healing well, your baby is eating and gaining weight, is able to keep their body temperature at a normal range and is healthy enough to go home. The urologist will review all of the necessary urologic tests to ensure that the baby is emptying their bladder well on their own or the parent/care giver is able to help the baby empty their bladder by a catheter. The neurosurgeon will make sure the back is healing well and that the hydrocephalus is stable (either with or without a shunt). All babies will receive a hearing test and newborn screen to rule out other medical conditions. Most babies can go home in a regular rear-facing infant car safety seat but if that is not possible, a specially designed baby car bed will be provided. At discharge, the social worker or nurse will help set up follow up appointments with the specialists and Spina Bifida Program.

What is it like to bring my baby home?

Parents spend the entire NICU stay learning how to care for their baby and looking forward to bringing their baby home. But when discharge day arrives, their excitement and relief can also be mixed with anxiety. For the first time, there won’t be round-the-clock healthcare providers to care for your baby, answer your questions and calm any fears. First-time parents realize (as all first-time parents do) that they will be solely responsible for caring for their baby, and those with other children at home worry about how they will care for the new baby along with their other children. These are all very normal fears.

The first day home will hopefully feel like a huge relief. You made it through the hardest parts of having a baby with Spina Bifida—the pregnancy and the NICU.

Coming home can also be a big adjustment. There will be people to call, appointments to make, prescriptions to fill, diapers to change and a schedule to keep. Many parents say one benefit of their baby being in the NICU is that he or she is already on a three-hour feeding schedule, which is often maintained at home. Friends and family may be eager to visit you and the baby during the first few days at home, but you should protect your time as best as possible so that you can rest and begin recovering physically and emotionally from what can be a stressful experience.