Spina bifida affects the entire family. Meeting the complex needs of a person affected by spina bifida involves the whole family and can be challenging at times. However, finding resources, knowing what to expect, and planning for the future can help. I'm sure it could be very challenging but rewarding at the same time, don't be afraid to ask for help from any of the great groups out there, a friend introduced me to Shine, a charity for Spine Bifida, seems to be a great resource you can find it on facebook as well as it's website.
Learning about Spina Bifida
When parents find out they are going to have a child with spina bifida, it can be overwhelming. It’s important that they know that most children born with spina bifida reach their full potential.
It is very important for parents to take an active role in managing their child’s care. Parents need to know about spina bifida and understand the health issues and treatment options to make the best possible choices for the health and happiness of their child.
Parents should talk with a health care provider about any questions or concerns they have.
Parents can start learning about spina bifida by reading CDC’s Facts and Health Issues and Treatments spina bifida pages.
The Spina Bifida Association provides information on spina bifida, and can be helpful in recommending clinics or health care providers who are experts in the care of children and adults with Spina Bifida
Physical Health―What to Expect
No two babies with spina bifida are exactly alike. Health issues will be different for each baby. Some babies have issues that are more severe than other babies. With the right care, babies born with spina bifida will grow up to reach their full potential.
Open Spina Bifida
When a baby is born with open spina bifida, in which the spinal cord is exposed (myelomeningocele), doctors will perform surgery to close it before birth or within the first few days of the baby’s life.
Hydrocephalus
Many babies born with spina bifida get hydrocephalus (often called water on the brain). This means that there is extra fluid in and around the brain. The extra fluid can cause the spaces in the brain, called ventricles, to become too large and the head can swell. Hydrocephalus needs to be followed closely and treated properly to prevent brain injury.
If a baby with spina bifida has hydrocephalus, a surgeon can put in a shunt. A shunt is a small hollow tube that will help drain the fluid from the baby’s brain and protect it from too much pressure. Additional surgery might be needed to change the shunt as the child grows up or if it becomes clogged or infected.
For more information, please visit the Spina Bifida Association website:
Hydrocephalus and Shunts in the Person with Spina Bifida
Mobility and Physical Activity
People affected by spina bifida get around in different ways. These include walking without any aids or assistance; walking with braces, crutches or walkers; and using wheelchairs.
People with spina bifida higher on the spine (near the head) might have paralyzed legs and use wheelchairs. Those with spina bifida lower on the spine (near the hips) might have more use of their legs and use crutches, braces, or walkers, or they might be able to walk without these devices.
Doctors can start treatment for movement problems soon after a baby with spina bifida is born. A physical therapist can work with parents and caregivers to teach them how to exercise a baby’s legs to increase strength, flexibility, and movement.
Regular physical activity is important for all babies, especially for those with conditions that affect movement, such as spina bifida. There are many ways for babies with spina bifida to be active. For example, they can:
Play with toys, such as activity mats.
Enjoy parks and recreation areas.
Participate in community programs, such as the Early Intervention Program for Infants and Toddlers with Disabilities, which is a free program in many communities.
Do exercises recommended by a physical therapist.
Babies with spina bifida can develop sores, calluses, blisters, and burns on their feet, ankles, and hips. Parents and caregivers can help protect the baby’s skin by:
Checking the baby’s skin regularly for redness, including under braces.
Trying to avoid hot bath water, hot irons and hot or unpadded seatbelt clasps that may cause burns.
Making sure the baby doesn’t stay out in the sun too long.
Making sure the baby is not sitting or lying in one position for too long.
Latex (Natural Rubber) Allergy
Many babies with spina bifida are allergic to products that contain latex, or natural rubber. This means they should not use items made of natural rubber. For babies, this would include rubber nipples and pacifiers. The baby can wear a bracelet to alert other people of the allergy. Parents and caregivers should discuss this with their baby’s health care providers.
Health Checks
Every baby needs a primary health care provider (for example, a pediatrician, family doctor, or nurse practitioner). The primary health care provider will want to make sure that the baby is healthy; developing normally; and receiving immunization against diseases and infections, including the flu.
In addition to seeing a primary health care provider, shortly after birth the baby will be checked and treated as needed by doctors who specialize in different parts of the body. These doctors might suggest treatments or surgeries to help the baby.
These specialists might include:
An orthopedist, who will work with the baby’s muscles and bones.
A urologist, who will check the baby’s kidneys and bladder.
A neurosurgeon, who will check the baby’s brain and spine.
Finding Support
Having support and community resources can help increase confidence in managing spina bifida, enhance quality of life, and assist in meeting the needs of all family members. It might be helpful for parents of children with spina bifida to talk with one another. One parent might have learned how to address some of the same concerns another parent has. Often, parents of children with special needs can give advice about good resources for these children.
Remember that the choices of one family might not be best for another family, so it’s important that parents understand all options and discuss them with their child’s health care providers.
A Spina Bifida Association (SBA) Chapter is a great place to connect with other families. The SBA website can provide information on how to find a local chapter.
The Spina Bifida Association Parents ListServ bring people together online to discuss topics such as parenting a child with spina bifida and growing up with spina bifida.
National Resource Center: Get information and find clinics or health care providers who are experts in spina bifida.
Preparations Website: Resource about becoming an Adult Living Successfully with Spina Bifida
Life with a toddler or preschooler is both fun and challenging. These 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.
Encouraging Independence
For toddlers and preschoolers with spina bifida, there are many ways that parents and other caregivers can help them become more active and independent, such as:
Teaching the child about his or her body and about spina bifida.
Encouraging the child to make choices, such as between two items of clothing.
Asking the child to help with daily tasks, such as putting away toys.
Children with spina bifida might need extra help at times. But it is very important that children be given the opportunity to complete a task before help is given. It is also important that parents give only the help that is needed rather than helping with the entire task. Parents must learn the difficult balance between giving the right amount of help to increase their child’s independence and confidence, while at the same time not giving the child tasks that cannot reasonably be completed―which might decrease their child’s confidence.
Starting school brings children into regular contact with the larger world. Friendships become important and physical, social, and mental skills develop rapidly during this time. Children who feel good about themselves are more able to resist negative peer pressure and make better choices.
This is an important time for children to become more responsible and independent. This is also a good time to start exploring potential lifetime interests such as hobbies, music, or sports. Developing independence can be challenging for people affected by spina bifida. It is important to begin working on this process early in childhood.
School
Many children with spina bifida do well in school. But some can experience difficulties at school, especially children with shunts that are used to treat hydrocephalus (often called water on the brain). These children often have problems with learning. They might have difficulty paying attention or work slowly, be restless, or lose things. They also might have trouble making decisions. There are activities that children can do both at home and at school to help with these problems. Healthcare professionals can provide information about these activities.
Individualized Education Plan (IEP)
An Individualized Education Plan is important because it will help children develop skills at school. Children who participate in special education classes will have an IEP. An IEP is a legal document that lets the school know what kinds of assistance will be needed by a child during the school day. An IEP is created by parents and school personnel, such as a psychologist, teachers, a school nurse, and a physical education teacher, as well as any other professionals that parents think might be helpful.
504 Plan
If a child does not qualify for an IEP, parents can request a 504 Plan be developed for their child at school. 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 may be needed to 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 tape recorder or keyboard for taking notes and a wheelchair accessible environment.
Many physical, mental, emotional, and social changes are associated with the adolescent and teen years. Teens and adolescents develop their own personalities and interests and want to become more independent.
This transition period can be challenging, especially for people affected by spina bifida. It is important for the parents and caregivers of adolescents and teens with spina bifida to take active steps toward making them independent starting in childhood, so that by the time they are older they can develop the necessary skills to help them reach their full potential.
Physical Health
As people with spina bifida mature, they will perform more and more activities themselves. Most teens will dress and bathe themselves, manage their bathroom plans, and move about independently in their homes and communities. They might begin to make their own doctor appointments and continue to participate in updating their own Individualized Education Plan (IEP) or 504 Plan, if they have one. They also should participate in a seating or wheelchair evaluation at least once each year if they use a wheelchair. This will help the wheelchair to fit better and make moving about easier.
Mobility and Physical Activity
People with spina bifida higher on the spine (near the head) might have paralyzed legs and use wheelchairs. Those with spina bifida lower on the spine (near the hips) might have more use of their legs and use crutches, braces, or walkers, or they might be able to walk without these devices.
A physical therapist can work with adolescents and teens to teach them how to exercise their legs to increase strength, flexibility, and movement.
Regular physical activity is important for all teens and adolescents, but especially for those with conditions that affect movement, such as spina bifida. CDC recommends 60 minutes of physical activity a day. There are many ways for teens and adolescents with spina bifida to be active. For example, they can:
Engage in physical activities with friends.
Roll or walk in the neighborhood.
Lift weights.
Participate in sports activities (for example, swimming) and on teams for people with and those without disabilities.
Attend summer camps and recreational facilities that are accessible for those with disabilities.
The transition from adolescence to adulthood can be a time of growth and success, as well as difficulty. For people with spina bifida, it is especially important to begin planning for transitions in childhood so they are able to lead independent lives as adults.
Young adults affected by spina bifida can face challenges, such as:
Learning to take care of their own health needs.
Working.
Going to school.
Volunteering.
Finding and using transportation.
Living outside their parents’ home.
Developing healthy relationships.
Young adults with spina bifida can provide or manage much of their own care. Some examples include:
Finding new doctors that care for adults affected by spina bifida.
Obtaining medical insurance if they are no longer covered under their parents’ health plan.
Talking to health care professionals about their condition.
Making doctor appointments.
Ordering or reordering medications and supplies.
Seeking immediate medical help when needed.
Managing their own bathroom plan
Physical Activity
Regular physical activity is important for all people, but especially for those with conditions that affect movement, such as spina bifida. CDC recommends 60 minutes of physical activity a day. There are many ways for people with spina bifida to be active. For example, they can:
Roll or walk in the neighborhood.
Lift weights.
Participate in sports activities (for example, swimming) and teams for people with or those without disabilities.
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