My son was born with Spina Bifida, hydrocephalus, and Chiari malformation. So it is important to us to continue to educate our friends and family how hydrocephalus affects our family. It’s not something that a simple surgery can fix. For us and every other family out there, it’s a way of life.

I want to share with you some important facts concerning hydrocephalus. I also want to highlight that this information was found from the Hydrocephalus Association’s website.

I did not come up with these facts on my own. But I felt they were worth repeating. So please share this information with your family and friends.

By raising awareness we can encourage others to fight for better treatments and hopefully, one day, a cure.

Did you know…

• 1 out of 770 babies will develop hydrocephalus. This makes it as common as Down’s syndrome and more common than spina bifida or brain tumors.
• The core technology used to develop the shunt has not changed significantly since the 1950’s!!
• Hydrocephalus is the leading cause of brain surgery in children.
• Hydrocephalus is a life threatening condition that affects approximately 1 million Americans. (I wonder what those numbers are for under-developed countries?)
• An estimated 50% of shunts fail within the first 2 years in children. This required yet another brain surgery!
• Over 36,000 shunt surgeries are performed each year (one every 15 minutes) and more than half of them represent emergencies.
• Anyone at any age can develop hydrocephalus.
• There are approximately 10,000 pediatric hospital admissions for shunt malfunctions each year.
• The most common surgical treatment for hydrocephalus is a shunt. This device is placed in the brain to drain excess fluid away from the brain and to decrease pressure.
• Hospital charges for hydrocephalus are over $2 billion per year!
• There is no way to prevent hydrocephalus. There is no cure. The only known treatment requires brain surgery.
• Hydrocephalus and a shunt can mean a lifetime of multiple brain surgeries. Dozens of brain surgeries are common.
• Nearly 40% of infants diagnosed with hydrocephalus develop behavioral issues and 20% will develop autism.
• Pediatric hydrocephalus alone accounts for more than 40,000 hospital admissions each year (433,000 hospital days.)
• 80% of Spina Bifida children also have hydrocephalus.
• The Hydrocephalus Association is the largest private funder of hydrocephalus research in the U.S.
• There are currently 10 drugs in testing to prevent, treat, or manage hydrocephalus.
• Hydrocephalus Association funded research has reduced shunt infections by 36%.

What You Can Do to Raise Awareness

Were any of these facts surprising to you? Then share it with your friends on social media. Visit Hydrocephalus Association’s website and share one of their social media graphics.

Continue to fight for the services your child needs to succeed in learning and growing. That may be therapy services, IEP’s or other forms of help for school, or for medical services provided by doctors.

By continuing to fight for the services that our children need, we are raising awareness about how hydrocephalus affects every part of life. If we don’t fight for our children to receive the care and support they need, no one else will.

Resources:

20 Powerful Facts About Hydrocephalus

Hydrocephalus in Babies

The post September is Hydrocephalus Awareness Month appeared first on Breaking the Confines.

The only thing I received was a small booklet about hydrocephalus. Within its pages was a one page list explaining what symptoms to be aware of for shunt malfunction laid out in a list format. The booklet talked about how sometimes a shunt malfunction can be very sudden and symptoms can occur quickly, sometimes in a matter of hours or days.

The booklet also explained how important it was for early treatment to avoid serious complications. As if I wasn’t worried enough already, reading this really caused me great concern. My thought was everyone who looks after my child needs this information!

So, I searched in the best place for a free printable on signs of shunt failure… Pinterest. And you know what? I did not find one printable! Then I searched Google for a printable. Nothing. I could not believe that no one had created a printable on the signs of shunt malfunction when this was such a serious topic.

That’s why today I have a gift for you! It’s a free printable listing the signs of shunt malfunction in infants, toddlers, and children. There are four pages; one for each appropriate age (infants, toddlers, and children) and one page that combines all of them together.

How Long Does a Shunt Last?

Here are some statistics on shunt malfunction:

• The average lifespan of a shunt for infants is 2 years (okay, that’s a scary thought!)
• The average lifespan of a shunt for children over the age of two is 8-10 years
• The average number of revisions is 1-2 every 10 years
• Up to 4 in 10 shunts malfunction in the first year after surgery (another disturbing fact!)

With those odds it seemed like a good idea to let all caregivers know what signs and symptoms to look for in shunt malfunction. That way I could have peace of mind when I had to leave my son with the grandparents, the babysitter, at daycare, in the church nursery, at preschool, or anywhere else that I was not.

What Complications Come from Having a Shunt?

I have researched that there are five common types of complications that arise from having a shunt.

• Obstruction – This is a partial or complete blockage in the shunt which causes shunt malfunction. The CSF fluid starts backing up in the brain causing signs of hydrocephalus. The blockage could be due to blood cells or bacteria.
• Infection –  Shunt infection is typically right after shunt surgery and is caused by contamination of the shunt. But infection can still be likely to occur even up to six months after the placement of a shunt. Treatment for these types of infections should be done immediately to avoid life-threatening illnesses or brain damage.
• Overdrainage – This occurs when the shunt allows the CSF to drain too quickly from the ventricles in the brain which could cause the ventricles to collapse, broken blood vessels, and hemorrhages. Symptoms of overdrainage are headaches.
• Underdrainage – This happens when the shunt is not draining CSF quickly enough and the fluid begins to build up in the ventricles and the symptoms of hydrocephalus recur.
• Other Complications – Although shunts are very durable, they do tend to break down eventually. Catheters can become calcified or broken off. Components of the shunt can become disengaged or fractured due to the child’s growth or the age of the shunt.

Overdrainage and underdrainage are typically addressed by adjusting the rate of the flow of the shunt valve. If your child has a programmable VP shunt, the neurosurgeon can adjust the pressure setting in his office with a magnetic programmable device.

What are the Signs of Shunt Malfunction?

For infants

The signs of shunt malfunction are:

• Enlargement of the baby’s head
• The soft spot (fontanel) is full and tense when the infant is upright and quiet
• Prominent scalp veins
• Swelling along the shunt tract
• Vomiting
• Irritability
• Sleepiness and/or hard to wake
• Downward deviation of the eyes
• Less interest in feeding
• Fever
• Redness along the shunt tract
• Seizures

For Toddlers

The signs of shunt malfunction are:

• Head enlargement
• Vomiting
• Headache
• Irritability
• Personality change
• Sleepiness and/or hard to wake
• Loss of previous abilities (sensory or motor functions)
• Loss of appetite
• Fever
• Redness or swelling along the shunt tract
• Loss of coordination or balance
• Seizures

For Children

The signs of shunt malfunction are:

• Vision problems
• Vomiting
• Headache
• Irritability and/or tiredness
• Personality change
• Loss of appetite
• Loss of coordination or balance
• Difficulty waking up or staying awake
• Decline in academic performance
• Fever
• Redness or swelling along the shunt tract
• Seizures

How Often Should a Shunt Be Checked?

Since every child’s situation is different, there is no hard and fast rule on this one. My son has a ventriculoperitoneal (VP) shunt. He was seen by his neurosurgeon every six months for the first two years and then moved to once a year after the age of two. He has had no complications with his shunt and no seizures so I assume that could be the reason why they scheduled it like that.

This question is one to discuss with your child’s neurosurgeon since he knows your child’s history.

What Precautions Should My Child Take with a Programmable VP Shunt?

Magnets and EMFs

It is a known fact that magnets can change the pressure valve setting on some VP shunts depending on the type of shunt it is. The effects could either be reversible or irreversible.

One study by NCIB proved that certain smart phones did have an effect on the programmable valves of two types of shunts. The effect was reversible on one type and irreversible on the second type.

It’s important to know the model of the programmable VP shunt your child has, and to read all guidelines before using a product with a magnet.

Here are a few guidelines for shunts:

• Use cell phones on the opposite side of the head from the shunt
• Be wary of your child using audio headsets until you have checked the manufacturer’s guidelines
• Be aware of strong magnets and keep them away from your child, especially in close proximity of the shunt
• Be alert for signs that the programmable valve has changes. Signs to watch for would be the same as those listed above.

MRIs

Each time your child has an MRI, the technician needs to know your child has a programmable shunt. After the MRI your child will need to be seen by the neurosurgeon to have the shunt checked and reprogrammed. This needs to be done within four hours after the MRI.

If there is no one available to reprogram the shunt, do not have the MRI done.

MedicAlert Jewelry

It a good idea for your child to wear a MedicAlert bracelet stating that he has hydrocephalus and the model of his programmable VP shunt.

These bracelets are affordable and a great way to let others know about your child’s condition in the event that you are not there to speak on his behalf.

For more information and to order online, visit MedicAlert’s site here.

Abdominal Surgery

If your child needs abdominal surgery, the surgeon needs to know your child has a VP shunt so that precautions can be taken with the tubing.

Physical Activities

It is not recommended to play in contact sports, martial arts, or ride rollercoasters that accelerate at a rapid pace. All of these activities should be done with extreme caution.

What Concerns Do You Have as a Parent?

Let me know what your concerns are about shunts and shunt malfunctions. And don’t forget to get your free printable so other caregivers know what signs to look for in the event that the shunt starts to malfunction.

Resources

Smartphones and Programmable Shunts

Programmable VP Shunts

Hydrocephalus and Shunts from BMJ Journals

4 in 10 Shunts Malfunction in the First Year

Lifespan for VP Shunt in Infants

VP Shunts

The post Shunt Malfunction – Know the Signs and Symptoms in Children (Free Printable Included!) appeared first on Breaking the Confines.

What is Hydrocephalus in Babies?

Hydrocephalus is the accumulation of too much cerebrospinal fluid (CSF) in the ventricles of the brain. You may have heard the term “water on the brain,” which is the same thing as hydrocephalus.

There are four ventricles in the brain that produce and house cerebrospinal fluid (CSF). When there is a normal flow of CSF, it circulates in the brain and up and down the spine. In some cases the flow is disrupted due to a blockage. The CSF starts to back up in the brain and overflow creating more and more pressure on the brain as the ventricles continue to expand due to the constant rate of CSF production.

If there is too much pressure on the brain from the cerebrospinal fluid, it could damage brain tissue and cause a range of impairments. It can impair brain function, cause vision problems and developmental delays. If left untreated or not treated timely, it could cause severe brain damage or death.

What Are the Symptoms of Hydrocephalus in Babies?

Symptoms vary depending on the person and the age of the person. The following are the signs and symptoms of hydrocephalus in babies:

• For babies whose head has not fused together, yet, their head size will be quite larger than normal.
• The soft spot (fontanel) will be tense and bulging when sitting in an upright position
• Developmental delays
• A downward deviation of the eyes (also called sunsetting eyes)
• Vomiting
• Sleepiness
• Irritability
• Poor appetite
• Seizures

What is the Main Cause of Hydrocephalus in Babies?

Hydrocephalus in babies is often present even before the baby is born. This is called congenital hydrocephalus. The cause could be a variety of factors such as:

• A genetic defect
• Spina Bifida
• Aqueductal stenosis
• Arachnoid cysts
• An infection in the mother during pregnancy
• Dandy-Walker syndrome
• Chiari malformation
• Complications from premature birth

How is Hydrocephalus in Babies Diagnosed?

Congenital hydrocephalus is often diagnosed before the baby is born through routine ultrasounds. If it is not diagnosed during pregnancy, the most common way it is diagnosed is by measuring the size of the baby’s head. Abnormal enlargement of the head is an indicator that warrants further testing.

When I had my ultrasound at 20 weeks to confirm my son had Spina Bifida, they also diagnosed him with hydrocephalus. They were able to diagnose this by measuring the size of the ventricles in his brain.

As a side note, another indicator that he had Spina Bifida was the shape of his precious baby head. A lemon shaped head is a sign of Spina Bifida although it’s not exclusive to it.

Can Hydrocephalus Go Away?

Hydrocephalus is not curable but it is manageable with timely treatment. Since it is a chronic condition, it is essential to continually follow-up with your child’s neurosurgeon and neurologist. The neurosurgeon will want to have periodic MRI’s to make sure the hydrocephalus is being controlled. The neurologist will make sure your child is meeting his developmental milestones and monitor the signs and symptoms caused by hydrocephalus such as vision problems, possible seizure activity and developmental delays.

How is Hydrocephalus Treated?

The most common treatment for hydrocephalus is the placement of a shunt which acts as a drainage system for the cerebrospinal fluid. A long, flexible tubing is placed in one of the ventricles of the brain. A one-way valve attached to the tubing regulates the pressure of the CSF flow. The valve keeps it flowing in the right direction and at an acceptable rate. Sometimes the rate of the flow will need to be adjusted which can only be done by the neurosurgeon. The long, flexible tubing runs down the neck and into either the belly or a chamber of the heart. The CSF is then absorbed into the bloodstream.

Another way to treat hydrocephalus is by having a surgery called endoscopic third ventriculostomy (ETV). This is where the neurosurgeon uses an instrument called an endoscope to poke a hole in the bottom of the third ventricle in the brain. The purpose of the hole is to allow CSF to flow through the spaces of the brain where it was once blocked. This procedure is usually a recommended alternative to shunting if the neurosurgeon thinks your child is a candidate.

To find out more about ETV, click here to download Hydrocephalus Association’s fact sheet on ETV.

Neither of these treatments will cure hydrocephalus. It is important to follow up regularly with your child’s neurosurgeon for periodic evaluations to make sure the shunt or ETV is working properly.

It is also important to be aware of complications of an ETV and shunt failure, and to see your child’s doctor right away if these symptoms do appear.

What Other Treatments Are Offered?

As mentioned earlier, it is common for there to be physical and mental delays caused by the pressure of CSF on the brain. The kinds of therapies involved include:

• Early intervention services – Please take advantage of this parents! Find out who your local intervention program is through and contact them as soon as possible. The hospital where your baby is born will be able to help you find out this information. In the state I live in, the program provided is funded by the Department of Elementary and Secondary Education. They provide services to families who have children with disabilities and developmental delays. The age range is from birth up to three years. Because of this program, my son has received all the therapies he has needed to reach his milestones.
• Physical therapy – These therapists work with the gross motor functioning such as rolling over, sitting without support, crawling, walking, strength building, balance and coordination, and flexibility exercises.
• Occupational therapy – These therapists aid the physical therapist in crawling and walking but they also help with fine motor skills, sensory issues, hand-eye coordination, social skills, and various other life skills.
• Speech/language therapy – These therapists not only help with speech and language disorders but they also help with feeding disorders. Problems with this could be with chewing the food properly, swallowing, gagging, and sensory issues with foods.

At some point your child should be referred for a vision exam to rule out any vision problems due to the pressure of the CSF behind the eyes. It is not always an issue with children who have hydrocephalus, but it is common. If the child’s vision is normal, then your child will not need to be seen regularly by an ophthalmologist.

Can Babies with Hydrocephalus Lead Normal Lives?

Although hydrocephalus can cause mental and physical developmental problems/delays, most children will lead normal lives with some limitations. Most babies with hydrocephalus will have normal intelligence.

Just as it is with all children, babies with hydrocephalus will develop at their own pace. They may be slower in reaching certain developmental milestones. But that’s okay! As long as they are receiving adequate therapy and the love and support from their parents, they will surely surpass your expectations.

What Can Parents Do to Help?

To make sure your child lives a successful life with hydrocephalus, here is a brief summary of what you can do as a parent to help your child:

• Take your child to all scheduled doctor visits.
• Make sure your child is receiving the recommended therapy to reach critical milestones:
  • Early intervention services
  • Physical therapy
  • Occupational therapy
  • Speech/language therapy
• Be aware of the signs and symptoms of shunt failure.
• Educate anyone who will be responsible for the care of your child to recognize the signs of shunt failure.
• Don’t be afraid to call your child’s doctor if you have concerns about your child’s behavior or symptoms. If for some reason you are unable to reach the doctor, seek medical care immediately.

Learn as much as you can about the signs and symptoms of shunt failure and educate those who will be taking care of your child. To help with that, I have included a FREE printable that lists the signs of shunt failure for infants, toddlers, and children. You can hand these out to anyone that will be watching your child. I recommend putting these up everywhere your child will be when not in your care; places like Grandma and Grandpa’s house, the church nursery, on your fridge for the babysitter, childcare center, pre-school. You get the picture. Everyone needs to be aware at all times. These symptoms should not be considered typical in a child with a shunt and medical attention should be sought immediately.

Share With Me!

What other questions do you have about hydrocephalus? Comment below or send me a personal message. I’d love to hear from you!

References

National Institute of Neurological Disorders and Stroke – Hydrocephalus Fact Sheet

KidsHealth – Hydrocephalus

The post Hydrocephalus in Babies – Your Most Common Questions Answered appeared first on Breaking the Confines.