Spina bifida is a congenital (present at birth) defect wherein the spinal cord protrudes out of the spine. There is an opening at the back where a sac covering the spinal cord can be seen. The exposure of the spinal cord and the nerves make them vulnerable to damage and infection. This is the reason for the many medical problems associated with spina bifida.
Myelomeningocele is the most common form of spina bifida and is responsible for most disabilities caused by this defect. According to the U.S. National Institutes of Health (NIH), spina bifida is the most common disabling birth defect in the country, with an incidence of 0.7 per 1,000 live births.
People with spina bifida can have long-term or lifetime challenges physically, psychologically, and socially. Ideally, a multidisciplinary team comprised of physicians, nurses, physical therapists, social workers, and counsellors, work together to manage the symptoms of spina bifida.
Family support and supportive care services such as home care and rehab are likewise integral in making sure the individual with spina bifida live a full, productive life despite some limitations.
Advantages of Home Care Support
There is no substitute for focused medical care and support by families of persons with spina bifida. Prompt surgery to close the opening and prevent further complications is done by doctors shortly after birth is an important first step. As the infant moves into the toddler, school age and adolescent years, the family needs to provide a caring environment for their loved one with spina bifida in handling day-to-day challenges.
However, families and relatives are often very busy at work and often have little time to accompany spina bifida patients at home or elsewhere. If you are in this situation, you can attest to the fact that no matter how you wanted to, you almost always cannot find the time nor the energy to take care of your loved one.
Getting home care services can solve this dilemma. For those with relatives suffering from spina bifida, this personalized, focused service can be especially useful. Let’s outline about the advantages of living at home with a home health aide or a personal care attendant.
- Spina bifida patients usually develop physical abnormalities, leg weakness, and even paralysis. They need to use canes, crutches, walkers, or wheelchairs to move about. Home care personnel can assist them on how to safely use these assistive devices until they can manage on their own.
- Loss of sensation due to paralysis can put them at risk for burns, cuts or other serious injuries. A PCA or health aide will make sure they are safe in daily activities. They can also be tasked to take care of bathing, grooming, and feeding. In the process, PCAs can assess skin changes or signs of injury better than the patient. They can both inspect and treat minor cuts, blisters or bruises at home.
- Because paralysis is a major complication of spina bifida, patients are prone to bed sores, contractures, fractures and burns. Home health personnel can prevent these problems by encouraging exercise and physical activity. They can even continue active or passive range-of-motion exercises at home initiated by therapists.
- Many people with spina bifida are obese because of lack of physical activity, lower metabolic rate, and poor eating habits at home. Home care services can provide caregivers who are knowledgeable in preparing healthy, nutritious meals. They also motivate and assist those with spina bifida to exercise more and eat less to prevent obesity and its complications.
- Individuals with spina bifida can have bowel and urinary problems including incontinence and frequent urinary tract infections (UTI). PCAs and home health aides are trained to assist patients with these difficulties. They are trained to assist in changing diapers, use of commodes and bedpans, maintaining urinary catheters, and safe assistance in using the bathroom.
- Home care personnel can prepare nutritious, fiber-rich meals for your family member to prevent constipation. Because they have spina bifida, your loved one may also suffer from memory problems and cognitive functioning. By letting a PCA prepare dietician-approved meals, your loved one is spared of having to deal with complicated and risky food combinations.
- Latex allergy is a significant problem for individuals with spina bifida. Having a companion at home can reduce the risk by having PCAs monitor household items that contain latex such as children’s toys. Home health aides can also coordinate any latex allergy to medical personnel before a procedure is done.
- Individuals with spina bifida often suffer from learning disabilities and developmental problems. Your school age child may not progress as fast as his or her peers. Teachers and counselors can provide the extra help. Home care services can further assist your child with school work. Because, home care personnel spend more time with spina bifida patients, they can give valuable feedback as to the behavior of the child at home.
- PCAs and home health aides serve as valuable companions at home and in the community. They encourage the child or adult with spina bifida to communicate and engage others. If they realize that they receive help from others to enjoy daily activities without sacrificing independence, they open up and socialize more. Depression, another common problem in those with spina bifida, can thereby be prevented.
Spina bifida is a common birth defect in the United States and elsewhere. Full medical attention to manage symptoms and prevent complications is needed. Moreover, the encouragement and support of the family is also important.
Because spina bifida may cause lifelong disability, it is vital for your loved ones that have this condition to receive consistent care at home. If you are experiencing lack of time and other constraints, you can avail of qualified home care services that will take care of your loved one with spina bifida even when you’re not around. By making sure they get the care they need, you can be confident that they can still lead full and productive lives.