spina bifida children | Living with spina bifida: Toddlers and preschoolers

Living with spina bifida: Toddlers and preschoolers



    Promote independence
    Physical health: what to expect
    Security
    Search support
    References
    related links

Father with his son

Life with a small child or preschooler is fun and, at the same time, it is full of challenges. These children go through enormous mental, social and emotional changes. They have a lot of energy and enthusiasm to explore and learn about the world and become independent. Developing independence can be especially difficult for children with spina bifida. Parents must begin to help their children develop independence from the early years of childhood.
Promote independence

In the case of young children and preschoolers who have spina bifida, there are many ways in which parents and other caregivers can help them become more active and independent, such as:

    Teach the child about his body and about spina bifida.
    Encourage the child to make decisions, for example, between two pieces of clothing.
    Ask the child for help with everyday tasks, such as storing toys.

Children with spina bifida may need extra help at times. But it is very important to give them the opportunity to complete a task on their own before helping them. It is also important that parents only give the necessary help and not help with the whole task. Parents must find the delicate balance between providing the right amount of help to increase the independence and confidence of the child and, at the same time, not give tasks that, reasonably, can not complete, as this could reduce their confidence.
Physical health: What to expect

No two children with spina bifida are exactly the same. Health problems vary from one child to another. Some children have more serious problems than others. With proper care, children born with spina bifida will reach their full potential when they grow up.
Mobility and physical activity

Children with spina bifida move in different ways. These include walking without any equipment or help; walk with braces, crutches or walkers and use a wheelchair.

Children with spina bifida in a higher area of ​​the spine (near the head) may have leg paralysis and use a wheelchair. Those who have spina bifida in a lower area of ​​the spine (near the hip) may have more use of their legs and use crutches, braces, or a walker, or they may be able to walk without these devices.

A physiotherapist can work with the child, parents and caregivers and teach them to exercise the child's legs to increase their strength, flexibility and movement.

Regular physical activity is important for all children, but especially for those with conditions that affect movement, such as spina bifida. There are many ways for children with spina bifida to stay active. For example, they can:

    Actively participate in games with friends.
    Go out in the wheelchair or walk through the neighborhood.
    Enjoy parks and recreational areas with playgrounds that are accessible to people with disabilities.
    Participate in community programs, such as the Early Intervention Program for Infants and Toddlers with Disabilities and the Special Education Services Program for Children with Pre-School Disabilities, which are free programs that many communities have.
    Do exercises following the recommendations of a physiotherapist.

Using the bathroom

Children with spina bifida often can not control when they go to the bathroom (incontinence). They can also develop urinary tract infections. It is important to develop a plan to go to the bathroom that works and is as simple as possible. This can improve the health, participation and independence of children who have spina bifida, and prevent them from feeling embarrassed.


Health care providers can help develop a plan for the child. A tube (catheter) is inserted into the child's bladder to help drain urine. In some cases, more fiber may be added to the diet so that bowel movements are regular. It is also possible that surgery is recommended.
Skin

Children with spina bifida may have sores, calluses, blisters and burns on the feet, ankles and hips. However, they may not realize when they appear because they may not have sensitivity in certain parts of the body. In addition, young children may not know how to tell parents that they have skin problems.

Parents and caregivers can do the following to help protect the child's skin and teach him to do it too:

    Check the child's skin regularly to see if there is redness, also under the orthotics.
    Try to avoid hot water baths, hot irons and hot or uncovered buckles on the safety belt, which can cause burns.
    Make sure that the child uses shoes with the correct number at all times.
    Put sunscreen on the child and make sure he is not in the sun too long.
    Make sure the child does not sit or lie in the same position for too long.

Health controls

All children need a primary care provider (such as a pediatrician, family doctor, or specialized nurse), who will make sure the child is healthy, is developing normally, and receives vaccination for diseases and infections, including influenza (flu ).

In addition to seeing a primary care provider, a child with spina bifida will receive the necessary controls and treatments from doctors who specialize in different parts of the body. It is possible that these doctors suggest treatments or surgeries to help the child.

These specialists can be:

    An orthopedist, who will take care of the child's muscles and bones.
    A urologist, who will check the kidneys and bladder of the child.
    A neurosurgeon, who will check the child's brain and spine.

Security

Safety is an important issue for children with spina bifida. These children may have a higher risk of injury and being victims of abuse. It is important that parents and other family members teach them to stay safe and what to do if they feel threatened or if they are hurt in some way.
Search support

Having support and resources in the community can help increase confidence in the treatment of spina bifida, improve the quality of life and help meet the needs of all family members. Parents of children with spina bifida may find it helpful to talk with other parents like them. It is possible that one of those parents has learned to address some of the concerns that another parent has. Often, parents of children with special needs can recommend good resources for those children.

Remember that one family's options may not be the best for another family, so it is important for parents to understand all options and discuss them with their child's health care providers.

A division of the Spina Bifida Association (SBA) is an excellent place to connect with other families. On the SBA website you will find information on how to find a local division.
References

Sandler, Adrian, M.D. (2004). Living with Spina Bifida: A Guide for Families and Professionals. University of North Carolina Press: Chapel Hill.

Merkens, Mark J., M.D. and the Spina Bifida Association's Professional Advisory Council (2006). Guidelines for Spina Bifida Health Care Services Throughout the Lifespan. Third edition. Spina Bifida Association.