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How to Encourage Independence in Your Child with Spina Bifida

By Complete Care Specialist October 09, 2019

Each year, more than 3,000 babies in the U.S. are born with neural tube defects. This number is even higher in the European Union. Spina bifida, one of the most common birth defects, is diagnosed in about 1,645 infants annually.

This congenital anomaly affects a child's health and quality of life. It can have an impact on their mental and social well-being, possibly causing severe limitations. Approximately 80 to 90 percent of babies born with this disorder develop hydrocephalus, a condition characterized by fluid buildup in the brain.

As a parent, it can be challenging to care for a child with spina bifida. He or she may have difficulty walking and struggle with bowel or urinary incontinence

The good news is, you can encourage independence in your child and help them live a joy-filled life. Simple things, such as arranging playdates and teaching them how to put on their braces, can make all the difference.

To help you out, we've compiled a brief guide on how to help your little one with spina bifida develop self-management and independence. Read on to find out more!

Get Your Child Involved In Their Treatment Plan

Children with spina bifida face unique challenges and may have more health issues than their peers. Some need to wear braces or use wheelchairs to get around. Others are able to walk on their own but have weak leg muscles. In this case, physical therapy is paramount.

To help your child understand their body’s needs, involve them in their treatment. For example, explain to them why they need to wear braces and educate them on how physiotherapy benefits their health and why it's important to take their medications. If your child has difficulty walking and moving around, give them mobile freedom with a standing frame.

Many children born with this condition cannot control their bladder or bowel. Some also tend to develop urinary tract infections on a regular basis. This is why it is important to develop a bladder management program with your child. 

If your child has urinary retention or bladder incontinence, they may need to use a catheter. Several types of catheters exist, including intermittent catheters or indwelling catheters. It's important to teach your child how to self-catheterize in a clean or sterile field, making sure to minimize contamination.

If they must utilize an indwelling catheter, teach your child how to empty, clean, and change the drainage bags. Adequate hygiene is crucial to prevent catheter-associated urinary tract infections.

Promote Healthy Eating

Since bowel incontinence is a common problem among children with spina bifida, a high-fiber diet and therapeutic exercise are highly recommended. Encourage your child to eat plenty of fruits, vegetables, legumes, and whole grains to boost their fiber intake. Make sure they are drinking enough water throughout the day to stay hydrated. As a parent, you may schedule bathroom breaks throughout the day to create a routine of managing their bladder and bowel movements. 

Exercise

Instill a love of exercise in your child. Kids need the satisfaction of achieving independence, such as climbing, walking, and jumping. They also need to experience the joy of movement and its health benefits - both gross and fine motor movements. Activities, like placing toys and other objects in playdoh for your child to discover, and/ or building with Legos and blocks or stacking toys can help to improve your child’s fine motor skills.

Encourage your child to get active.  Adaptive parks and adaptive recreational areas, commonly found in larger cities, are great places where people with disabilities can get exercise.  Playing outside with friends or even just walking around your neighborhood encourages better health and independence. 

A Child With Spina Bifida Can and Should Be Independent

As a parent, it's your responsibility to encourage your child to be independent at an early age. Most behaviors, including diet, exercise, and self-care, are established and consolidated in childhood.

Reach out to physical therapists, occupational therapists, doctors, and other healthcare professionals. Together, you can develop a treatment plan that fits your child's needs and lifestyle.

Always keep in mind that safety is paramount for a child with spina bifida. Many children affected by Spina Bifida are not able to feel certain parts of their body, which may increase their risk of injury. Teach your child how to stay safe and when to ask for help.

Remember to celebrate success. This will motivate your child and push them toward even greater achievements. Plus, you'll spark a sense of joy in your child and help them to realize how far they’ve come. 

Looking for more tips on child development, mobility devices, or pediatric care? Browse the rest of our blog! We'll show you how to travel with a catheter, what to look for in urology supplies, and much more. If you have any questions regarding urology health, urinary catheters, other urology supplies, or where to find resources for a certain condition, give us a call at (800) 503-7604 and we will be happy to help. 


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