Infants, Toddlers, and Children

What parents need to know

Each person with spina bifida is different. Some children have health issues that are more severe than others. Each child's condition will change as they grow and develop.

Most of the focus of care when children are little is understanding what spina bifida means for that child and seeing how their condition can change over time. If you're caring for a baby with spina bifida, it is important for you to:

• Learn about spina bifida
• Visit the Spina Bifida Association website for more resources
• Talk with a medical provider about your questions or concerns

Learning about spina bifida

Myelomeningocele

When a baby is born with myelomeningocele (called open spina bifida), the spinal cord is exposed. Doctors will do a surgery to close the hole in the baby’s back. Surgery can happen before birth or in the first days of the baby's life.

Hydrocephalus

Many babies born with spina bifida get hydrocephalus (sometimes called water on the brain). This happens when brain fluid cannot drain through the natural channels in the brain and spinal cord. The extra fluid in and around the brain puts pressure on the brain and can cause the head to swell. Babies with hydrocephalus need to be followed closely and receive proper treatment to prevent brain injury.

If a baby has hydrocephalus, a neurosurgeon can put in a shunt. A shunt is a small hollow tube. When placed, it drains fluid from the baby's brain and protects it from too much pressure.

Everyday life

Mobility and physical activity

Doctors can start treatment for mobility problems soon after a baby with spina bifida is born. A physical therapist can work with caregivers to teach them how to exercise a baby's legs to increase strength and flexibility. A baby can be fit with braces to help their legs develop without a bend and support them as they begin to crawl and walk.

Regular physical activity is important for all children, including for those with conditions that affect mobility, such as spina bifida. Babies and children with spina bifida can be active like their peers. For example, they can:

• Play with age-appropriate toys

• Enjoy parks and recreation areas

• Participate in community programs, which are free in many communities

• Do exercises recommended by a physical therapist

Skin care

Babies and children with spina bifida can develop sores, blisters, calluses, and burns on their feet, ankles, and hips. Many children cannot feel their skin below the level of their spine defect, so they will not react to pain in that part of their body. Parents can take these steps to help protect their child’s skin:

• Check skin daily for redness. Check areas under braces, areas that can become wet or damp, and areas that are constantly pressed or squeezed (i.e. the child's bottom, ankles, toes and skin around any elastic clothing/under any snaps, buttons, zippers)

• Avoid hot bath water

• Avoid hot or unpadded seatbelt buckles that may cause burns

• Make sure they don't stay in the sun too long to avoid sunburn

• Make sure they aren't sitting/lying in one position for too long

Latex allergy

Many people with spina bifida are sensitive to latex, or natural rubber. Babies and children with latex allergies should not use items made of natural rubber ("latex"). This would include rubber nipples and pacifiers. Beginning as an infant, children can wear a medical alert bracelet to warn other people of the allergy. Parents and caregivers should discuss this with their child's medical providers.

Encouraging independence

Young children experience huge mental, social, and emotional changes. They have a lot of energy and enthusiasm for exploring and learning about their world and becoming independent. Developing independence can be especially challenging for children with spina bifida. Parents should start helping their child develop independence early in childhood.

There are many ways that caregivers can help their child become more active and independent in early childhood, before they start school:

• Teach the child about their body and about spina bifida
• Encourage the child to participate in their own care, so they can take care of some of their needs independently
• Ask the child to help with household tasks
• Involve child with activities outside of the household to interact with other children

Children with spina bifida might need extra help at times, but it is very important that they are given the chance to complete a task on their own, before help is given. Parents should make sure tasks match their child's age and skills and provide only enough help to build their child's independence and confidence.

Preparing for school

Bathroom Plan

Many children with spina bifida cannot control when they lose urine or stool; this is also called incontinence. This may make urinary tract infections more common.

It is important that parents develop an easy-to-follow bathroom plan for their child. Bathroom plans depend on the needs and skills of the child. A healthcare provider can help you make a plan. These plans commonly include the use of a catheter, which is a tube that helps the child's bladder drain urine. In some cases, extra fiber in the diet helps keep bowel movements regular.

Learning

Many children with spina bifida do well in school, but some experience difficulties with learning, especially children who have shunts used to treat hydrocephalus. These children may have trouble making decisions, difficulty paying attention or work slowly, are restless, or forget things. Healthcare professionals can help develop an education plan for your child to help them in school and suggest activities that the child can do to help with these challenges.

Individualized Education Plan (IEP)

An IEP is a legal document that lets the school know what kind of assistance a child needs at school and is written for your child’s specific developmental and educational needs. It is created by parents and school personnel which can include psychologists, teachers, school nurses, physical education teachers, and other professionals.

504 Plan

If a child does not qualify for an IEP, parents can request a 504 Plan be developed for their child. Usually, a 504 Plan is used by a general education student who is not eligible for special education services. By law, children may be eligible to have a 504 Plan which lists accommodations related to a child's disability.

The 504 Plan accommodations can give the child an opportunity to perform at the same level as their peers. For example, a 504 Plan may include the child's assistive technology needs, such as a tablet or laptop to take notes. It may also ensure they have a wheelchair accessible environment at school.