Caring for an Infant or Child with Spina Bifida

Every child with spina bifida is different. Some have more serious health problems than others, and each child's condition changes as they grow. Medical care for infants and children focuses on keeping the body working well and treating problems as they arise, and in the early years much of it is about understanding what spina bifida means for this particular child. Parents caring for a baby with spina bifida should learn about the condition, look to the Spina Bifida Association for resources, and bring questions and concerns to the child's medical providers.

Finding support

Learning that a child has spina bifida can be overwhelming. Connecting with other parents in the same situation, and with community resources, can build confidence in managing the condition, help with decisions, and help meet the needs of the whole family. The Spina Bifida Association has local chapters.

Surgery at or before birth

When a baby is born with myelomeningocele, also called open spina bifida, the spinal cord is exposed. Surgeons close the opening in the baby's back, either before birth or in the first days of life.

Hydrocephalus

Many babies with spina bifida develop hydrocephalus, sometimes called water on the brain. Fluid around the brain cannot drain through its natural channels in the brain and spinal cord, and the buildup puts pressure on the brain and can make the head swell. These babies need close follow-up and treatment to prevent brain injury. A neurosurgeon may place a shunt, a small hollow tube that drains fluid from the brain and protects it from too much pressure.

Mobility and activity

Treatment for mobility problems can start soon after birth. A physical therapist can teach caregivers exercises that strengthen and loosen a baby's legs, and braces can help the legs develop straight and support the child as they begin to crawl and walk.

Regular physical activity matters for every child, including those whose mobility is affected. Children with spina bifida can be active like their peers: playing with age-appropriate toys, enjoying parks and recreation areas, joining community programs (free in many places) and doing exercises a physical therapist recommends. Early intervention services can also help.

Protecting the skin

Children with spina bifida can get sores, blisters, calluses and burns on their feet, ankles and hips. Many cannot feel their skin below the level of the spinal defect, so they do not react to pain there. Parents can help by:

• checking the skin every day for redness, especially under braces, in areas that get wet, and where skin is pressed or squeezed, such as the bottom, ankles, toes, and around elastic, snaps, buttons and zippers
• avoiding hot bath water, and hot or unpadded seatbelt buckles that can burn
• limiting time in the sun to prevent sunburn
• making sure the child does not sit or lie in one position too long

Latex allergy

Many people with spina bifida are sensitive to latex, or natural rubber. Children with a latex allergy should avoid anything made of it, including rubber bottle nipples and pacifiers. From infancy, a child can wear a medical alert bracelet to warn others. Parents should talk this over with the child's providers.

A bathroom plan

Many children with spina bifida cannot control when they pass urine or stool, known as incontinence, which can make urinary tract infections more common. Parents should work out an easy-to-follow bathroom plan suited to the child's needs and skills, with help from a health care provider. Plans often include a catheter, a tube that helps drain urine from the bladder, and sometimes extra fiber in the diet to keep bowel movements regular.

Encouraging independence

Young children go through huge mental, social and emotional changes, with lots of energy for exploring and becoming independent. Independence can be especially hard for children with spina bifida, so parents should start encouraging it early. Before school, caregivers can:

• teach the child about their body and about spina bifida
• have the child take part in their own care, so they can handle some needs themselves
• ask the child to help with household tasks
• involve the child in activities outside the home with other children

Children with spina bifida may sometimes need extra help, but it is very important to let them try a task on their own first. Match tasks to the child's age and skills, and give only as much help as builds independence and confidence.

School and learning

Many children with spina bifida do well in school, but some have learning difficulties, especially those with shunts for hydrocephalus. They may have trouble making decisions, paying attention or remembering, may work slowly or be restless. Health professionals can help plan the child's education and suggest activities to help.

• An IEP is a legal document, written by parents and school staff such as psychologists, teachers, school nurses and physical education teachers, that sets out the help a child needs at school for their specific developmental and educational needs.
• A 504 Plan can be requested for a child who does not qualify for an IEP, usually a general education student not eligible for special education. It lists accommodations related to the child's disability, such as a tablet or laptop for taking notes or a wheelchair-accessible environment, so the child can perform at the same level as peers.

Sources

• Centers for Disease Control and Prevention, "Infants, Toddlers, and Children" (Living with Spina Bifida). https://www.cdc.gov/spina-bifida/living-with/children.html
• Spina Bifida Association: http://spinabifidaassociation.org/ (chapters, hydrocephalus and shunts, mobility, skin health, latex allergy, urologic care and education guidelines); CDC, Early Intervention: https://www.cdc.gov/act-early/early-intervention/index.html