Raising a child with hydrocephalus can be a scary adjustment. There are symptoms to watch for, new terms to learn, and your child’s requirements constantly change as they grow and develop.
It’s a condition that requires life-long management. But after the initial shock and learning curve, many children with hydrocephalus and their families successfully manage happy lives.
Parenting a child with a chronic health condition like hydrocephalus can be challenging, but with the right approach, it can be a fulfilling and rewarding experience.
Tips on how to best care for your child living with hydrocephalus
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Educate yourself: Learn as much as you can about hydrocephalus, including its symptoms, treatments, and long-term effects. This will help you better understand your child's needs and how to manage their condition.
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Develop a support system: Build a network of friends, family, and healthcare professionals who can support you and your child. This may include doctors, therapists, support groups, and other parents of children with similar conditions.
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Advocate for your child: Be your child's advocate and speak up for their needs and rights. This may involve advocating for accommodations at school or in other settings, ensuring they receive appropriate medical care, and working with healthcare providers to develop a care plan.
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Create a routine: Establish a routine for your child that includes regular medical appointments, medication schedules, and any necessary treatments or therapies. This can help your child feel more secure and in control.
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Help your child become self-reliant: As your child grows and develops, it's essential to help them become more self-reliant in managing their hydrocephalus. This may involve teaching them how to take their own medication, monitor their symptoms, and advocate for themselves.
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Take care of yourself: Parenting a child with hydrocephalus can be emotionally and physically draining, so it's essential to take care of your own health and well-being. This may involve seeking support from others, taking time for self-care, and practicing stress-management techniques.
Every child and every family is different, and there is no one "right" way to parent a child with hydrocephalus. But with patience, understanding, and support, you can help your child thrive and live a fulfilling life.
Life expectancy of children with hydrocephalus
The life expectancy of children with hydrocephalus can vary depending on the severity of the condition and whether it is treated.
With appropriate treatment, the life expectancy of children with hydrocephalus can be normal. However, untreated or poorly managed hydrocephalus can lead to serious complications, such as brain damage, seizures, and developmental delays, which can affect the child's quality of life and life expectancy. In general, the earlier the condition is diagnosed and treated, the better the long-term outcome for the child.
In the video below, an HSA member, xx, talks about her life with congenital hydrocephalus. She was diagnosed at 6 months old and underwent 15 neurosurgeries by the time she was 16 years old.
Hydrocephalus signs and symptoms in children
The symptoms of hydrocephalus vary depending on the cause of hydrocephalus, although the increased pressure on the brain will present some common signs to watch for:
- Nausea or vomiting
- Personality or behaviour changes, such as irritability, tiredness, and loss of interest
- Headaches
- Vision problems or downward pointing of the eyes
- Poor balance
- Loss of bladder control
- Noticeable veins on the scalp
- Abnormal head growth
Signs of shunt failure or malfunction in children
Brain shunts are medical devices that are commonly used to treat hydrocephalus. Although brain shunts are generally safe and effective, they can sometimes malfunction, leading to serious complications. In children, an estimated 50% of shunts fail within the first two years, due to blockages or obstructions, infections, or malfunction of the shunt.
It's important to be aware of the signs and symptoms of shunt malfunction. If you suspect that your child's shunt may be malfunctioning, it's important to seek medical attention immediately to prevent serious complications. If you notice any signs of shunt failure, you should contact your doctor for advice. Symptoms can sometimes appear gradually, while other times it can be very quick. A close connection with your neurosurgeon and medical team is important.
Signs of shunt failure in children most often looks like:
- Drowsiness or fatigue
- Confusion, or behaviour or cognitive changes
- Extreme nausea or vomiting
- Light sensitivity and visual issues
- Intense headaches
Managing your child’s life with a shunt
The fear of shunt failure is a constant worry for parents raising children with hydrocephalus. A shunt malfunction means another surgery, possible brain damage, and many more medical visits. The possible financial strain and daily stress and responsibility can be overwhelming.
Some key issues to be aware of:
- Some shunts can be turned off by magnets, so make sure you know which type of shunt is used and whether you need to provide extra supervision around magnets
- As dehydration can cause fatigue and headaches, a child with hydrocephalus should stay properly hydrated throughout the day to prevent additional pain
- Some people living with hydrocephalus have difficulty judging space, speed and distance, and may need assistance crossing the road or remembering where to go
- Some sports are not recommended if they could potentially affect a shunt, such as contact sports that involve grabbing around the neck or hanging upside down
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Networks and community services can be a great help. It’s important that you have a great medical team because hydrocephalus often requires a multiple-treatment strategy. The Hydrocephalus Support Association is a great resource for children and families navigating their way through this condition. We can connect you to others who are going through similar scenarios.