Caring for a Child with Hydrocephalus

November 18, 2020
Janelle Thomas MSN, RN
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If your child has been diagnosed with a serious health condition, you understand the feeling of having your world turned upside down. You try to come to terms with this new reality, while at the same time trying to understand complex medical terms, and looking for ways to provide the best form of treatment. You also want to ensure your child has the best quality of life possible despite the circumstances. So, what can you do if your child has been diagnosed with hydrocephalus?

What is hydrocephalus?

Every person’s brain is surrounded by cerebral spinal fluid (CSF). This is a clear substance that cushions the brain and spinal cord and protects it from injuries. When a person has hydrocephalus, this means that there’s an excess of CSF in the ventricles of their brain. This excess fluid increases the size of the ventricles — which in turn puts pressure on the brain. As a result, brain tissue is damaged, affecting its ability to function properly.

While this condition could affect individuals of any age, many of the diagnoses are made in infants. In fact, it’s one of the most common reasons for brain surgery in children. However, if hydrocephalus is diagnosed early and treated properly, a child can grow up to have a full life expectancy. That being said, approximately 75% of children with hydrocephalus will have some form of motor disability.

7 Tips for Caring for a Child with Hydrocephalus

1. Build a Support Network

Taking care of any child with a health condition requires a team effort — comprised of medical providers, yourself, your family, and other caregivers. Have everyone in your home learn about medications, therapies, and proper monitoring. Have someone relieve you for respite when needed. Getting enough rest and taking time to eat well and decompress will make it easier for you to take care of your child.

2. Learn How to Monitor a Shunt

Children with hydrocephalus often need a ventriculoperitoneal (VP) shunt. This is a medical device designed to relieve pressure on the brain caused by fluid accumulation. It is installed through surgery. This involves a catheter connected to a tube that travels down to the abdomen. This is where any excess fluid is drained and it requires regular monitoring. Make sure everyone in your family — as well as caregivers — know how to do so. Signs that the shunt is malfunctioning include headaches, lethargy, confusion, vomiting, and/or seizures.

3. Do Not Let Them Play with Magnets

Remove any magnets in close proximity to your child and make sure they can’t reach out for them to play with them. If the magnets are strong, they may change the setting of the valve in the shunt. In addition, let teachers at school be aware of this issue — especially in science class, where handling magnets may be part of the curriculum.

4. Pay Close Attention to Their Development

Since so many children with hydrocephalus develop motor impairments, keep a close watch if you suspect your child has delayed learning, motor skills problems, or speech difficulties. Make a note of each issue you may notice so that you can discuss it with the pediatrician and specialists.

5. Be Aware That They May Need Special Education

While some children go on to have normal lives after being diagnosed with hydrocephalus, they may still experience difficulties with hand-eye coordination — which makes learning how to write difficult. They may also develop a learning disability, so schedule an Individualized Education Program (IEP) evaluation at their school.

6. Recognize Emergencies

Call 911 if you notice any signs that cerebrospinal fluid is building up in their brain again. These include fever, being less alert, vomiting, extreme fussiness, and/or seizures. Do not wait it out to see if it gets better. Too much buildup could result in long-term impairments — which could affect the intelligence of approximately 40 to 50% of children.

7. Teach Your Child About Hydrocephalus

As your child grows up, they will notice they have a shunt, that their motor skills may be affected, and that they need care more often than healthy children. Use simple terms that will normalize their condition. For example, mentioning that the catheter and tube are in place to help him not have headaches. If you have other children at home, treat them all the same, so that your child with hydrocephalus doesn’t feel singled out.

Contact Care Options for Kids for Home Health Care

It can be hard to balance your time between work, home, and caring for a child. That’s why our team of skilled professionals at Care Options for Kids is here to help.

Our home health care services offer support in the comfort of your home. We refer loving and competent nurses to provide customized care for families — from a few hours a day to around-the-clock supervision. Contact us directly to speak with a home health care professional or request a free in-home assessment. Together we can determine the best plan of action to keep your loved ones happy and healthy.

If you or a loved one are considering Pediatric Home Health Care Services, contact the caring staff at Care Options for Kids. Call today at (888) 592-5855.