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.


15 Comments for : Parents
    • Jackie
    • November 20, 2017
    Reply

    Hi there, I’m a mom to an 8 year old with a VP shunt and we recently were informed that his skull has grown over his shunt has anyone had to deal with this?

    • Rihan
    • November 16, 2017
    Reply

    I had 2 sons with the same problem recently my younger one got aborted. We were diagnosed Hydrocephalus with both my sons elder one was diagnosed in 19th week and the younger one in only 17th week. Want to know Y this is reoccurring and is there anyone having the same issue and do they have normal children too

    • 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.

      • Desiree Tidwell
      • August 22, 2017
      Reply

      My daughter was diagnosed around the same time. We also got a wide range of possibilities. I know waiting and having no control on things is very scary but stay positive as possible (hard I know!). When my daughter was born (at 39 weeks) I saw her for 30 seconds (enough time to give a little kiss) and she was rushed to NICU. She wasn’t breathing when she was born, she had difficulty eating, regulating her temp and needed to watch her glucose levels (I was Gestational Diabetic). I got to hold her for the first time that night. She was PERFECT! I fell in love immediately as you will to with your child. The following day she was transported to the children’s hospital for further evaluation by her Neurology team. She got her ETV (Endoscopic third ventriculostomy) Surgery at 9 days old because she was showing symptomatic sign that the pressure was getting to much. Shes now a HAPPY 6 month old! She has therapy once a week (We just love her therapist) and we do therapy with her daily. She just started to hold her head up. We are working on sitting up and rolling. She does everything she should at 6 months except shes behind on her milestones. Every case is different. Just cherish every moment. No question is a stupid question so ask your doctor. I hope all is well.

      • Lauren
      • September 28, 2017
      Reply

      My daughter was born in January, and we got her hydrocephalus diagnosis when I was 32 weeks.

      Between 30-32 weeks I began experiencing what I thought were Braxton hicks. 2 trips to the hospital in that span to receive ivs for dehydration and pre labor contractions.

      After a ultrasound with my OBGYN and the fluid was found on the brain (it wasn’t there in previous ultrasounds) we were referred to the specialists. An MRI confirmed the diagnosis.

      They didn’t want her to decend into my birth canal and put pressure on the skull and fluid so I had a planned c section at 39 weeks, just 6 days before her due date. We were given tours of the NICU and were informed of what would take place after her birth and so forth.

      My daughter was a canidate for surgery to try without a shunt, had it done the day after she was born. She had another surgery around 2 weeks later to place a shunt since 1st procedure failed.

      Since her shunt she’s been in the Help Me Grow program and has been meeting all her milestones with no problems 🙂

        • Jessica
        • November 17, 2017
        Reply

        What is the Help me grow program? My son was diagnosed at 4 months old and had a shunt placed as well.

    • Reply

      Hey jared!

      i saw your question asking id anyone had theie child diagnosed in utero. I would love to answer any questions you have parent to parent. My twins were both diagnoses at 19 weeks. Feel free to email me or find me on facebook!!

      Sarah Alberts

      • Julie
      • November 2, 2017
      Reply

      Hi Jared,
      Colin was diagnosed at our 24 week check up. It was horrifying and the doctors even spoke about the possibility of termination because of the amount of fluid present. Getting the amino test results were the longest 2 weeks of my life. Our outlook was grim and we had ultrasounds every week for the duration of my pregnancy. When Colin was born he was perfectly healthy! 5 fingers 5 toes! They did do an ultra sound on his brain and at that time determined that there was no need for a shunt right away, but to monitor the situation. Going from what we heard in pregnancy to now just monitoring the situation was exciting but jarring and confusing to say the least! He had an MRI at 6 months and then another at 12. His 12 month MRI showed great cause for concern and we were faced with having immediate surgery. All the doctors were dumbfounded because he had ZERO symptoms and on other health or development issues. He had his shunt placed on Sept 11th 2015 and we go in for our 2 year MRI in Jan. He is the most active, quick witted boy I’ve ever met, and he doesn’t even realize that he has hydrocephalus or a shunt. The doctors have been amazed and they’ve done case studies on him which hopefully will be helpful for other parents who have found themselves facing this. Not everyone’s stories are like ours and we realize how lucky are are, but we are proof that no matter how dim the situation may seem you never know until you know. Hang in there and enjoy this process. Embrace what your doctors tell you and always get second opinions. We chose our surgeon because he forced us to get a second opinion.

    • 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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