Parents

Dealing with your child’s hydrocephalus diagnosis can be overwhelming. It’s common to have countless questions that range from learning more about what hydrocephalus is to what one can expect a child’s experience to be across the life spectrum.  Some parents may need medically urgent questions answered and others may be searching for answers to much broader questions.

YOU’RE NOT ALONE, and the Hydrocephalus Association has created this portal as a resource for all of your questions. The journey of raising a child with hydrocephalus may be challenging and we’re committed to providing information to help you make the best decisions, advocate for your child, and connect with other parents.

Helpful Resources

The Hydrocephalus Association provides essential tools and resources that enable you to have more control of your life. We provide the following documentation and can help connect you with resources for questions or issues you may encounter.


Knowledge

Learn about hydrocephalus, including treatment options and emergency medical situations.


Hydrocephalus Resource Library (HRL)

Find educational articles about a variety of topics related to hydrocephalus.


Trending Topics

What are the topics we are receiving the most inquiries on right now? Through blogs, articles and videos, we provide you with information from medical professionals and Hydrocephalus Association support staff on the topics that are important to you.


Community Networks

Meet parents and caregivers who are navigating similar experiences with their children. Visit these portals:


Webinars

Be informed and current about hydrocephalus by tuning into interactive, free webinars on a variety of topics.


8 Comments for : Parents
    • Jared B
    • August 2, 2017
    Reply

    My wife and I are expecting a hydrocephalus child and I was wondering has anyone had their child been diagnosed during pregnancy and what were some outcomes from those. She’s 21 weeks today. We’ve got a wide range of medical opinions but the majority just say we have to wait it out. Any ideas

      • Trevor
      • August 3, 2017
      Reply

      Our son was diagnosed with hydrocephalus around week 35.

      When he was born the doctors did a quick check and he seemed fine so they immediately wrapped him up and handed him over to my wife. They didn’t take him out of the room or run any other tests right away. They kept him in the ICU for 10 days for observation where we were allowed to hold, feed & play with him. After 10 days we were allowed to bring him home.

      They decided that the pressure on his brain wasn’t severe enough to be operated on immediately. They wanted to wait as long as possible before doing surgery to help minimize other complications related to performing surgery on a newborn. We were sent home and told to watch for symptoms of the pressure building, and were asked to bring him into see the doctor every week.

      He was 2 months old when they did the surgery. It went flawlessly. We had a checkup at 1 week, 2 weeks, 1 month, 3 months, 6 months, 1 year, and now we bring him to the neurosurgeon annually around his birthday.

      He is now almost 6 years old. He has been diagnosed with triplegia. He can walk, run, & jump but has a slight limp and has difficulty using his left hand. The cerebral palsy only seems to be affecting his motor skills. In the last 6 months he has been suffering from headaches off and on that would last half-a-day and cause him to vomit. The doctors think it might be migraines because the shunt & ventricles all appear to be fine.

      All in all, he is doing great!

      I wish you good luck.

      • Peggy R
      • August 9, 2017
      Reply

      Hi Jared. I was right about where your are now this time last year. We found out at 22wks that our son had hydrocephalus. It can be caused by numerous things so that’s an important factor. In a high-tech ultrasound they were able to eliminate spina bifida and any other spinal cord issues or any brain tumor. They ran bloodwork to check for five or six different diseases that I could have that could cause hydrocephalus in my child. That all came back negative as well. What he ended up having is called aqueductal stenosis (narrowing of the passageway between the third and fourth ventricles in the brain). Sometimes this is genetic. Other times, such as in my son’s case, they don’t know what caused that narrowing to happen. The severity of the hydrocephalus can also make a difference. My son’s brain tissue was so squished that the doctor thought he might not even have a brain. Despite that severity, he’s doing very well at 10 months old. So always stay optimistic!! My maternal-fetal specialists and my son’s pediatric neurosurgeon decided to let my son continue to grow until 37wks so as to reduce complications of being premature in addition to his hydrocephalus. My son had other plans and came at 34wks 4 days. He was in NICU for exactly 1 month but honestly had very few complications. Most of that time was spent teaching him to feed from a bottle since they had to feed him via tube at first. He had his shunt placed at 10 days old. As for waiting to see what happens, that’s what everyone told us too. And it’s true to a certain extent. I would say to expect some delays in meeting physical milestones. Their heads are extra heavy so it’ll take them longer to be able to hold their head up, roll over, crawl, and walk. If you’re able, get your child physical and occupational therapy as early as possible to minimize delays. And do the therapy yourselves every day the therapist isn’t there. I know the unknown is scary, but just be reassured that your child is beautiful and will make you happier and prouder than you’d ever think possible.

    • Abu Elmali
    • July 19, 2017
    Reply

    my son with a shunt since 2001, do need to change the shunt, and when will be change.

    • Dodo
    • May 17, 2017
    Reply

    I have a 15 month boy who’s diagnosed with hydrocephalus since 4 month old .he had two MRI done . His last one was when he turned a year . The water level is still th same .his head circumference as today is 53.5 inches. Still hasn’t gotten a shunt yet .dt said water will dried out but he is having crossed eye watery eyes n since may 6 he is eating less .so have anyone lived with it n the water dried out please

    • Reply

      Honestly, I would get a second opinion. A pediatric neurosurgeon is the best way to go! My so. Was 6 months old when he was diagnosed, and his first doctor that observed some issues and chopped them up to something else every time…I almost lost him. I then went and found the most amazing pediatric neurosurgeon and she immediately performed surgery! He is now 8 years old, and thank the good Lord above has had no issues, but before his surgery, his symptoms were very similar to your sons. Don’t settle! A momma always knows…you’re in my prayers and God bless your family!

  1. Reply

    As you grow, so will your shunt. My daughter neurologist said “there is enough tubing in there for her to grow to 8 feet tall”

    • Kelly piwell
    • February 15, 2017
    Reply

    What age do you grow into your shunt?

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