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September is Hydrocephalus Awareness Month

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September is always a favorite month for my family. It’s my daughter’s birthday month, the fair parade, the start of Alabama football, cooler days, and the month to remind others and educate them about hydrocephalus.

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

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