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.


44 Comments for : Parents
    • John Fraser
    • November 15, 2018
    Reply

    Our son was born full term, but precipitously, this last April. Since our first ultrasound at 8 weeks prenatal, all we heard was how “perfect” and “healthy” he was. Then, at our 4-week check-up, a spike in head circumference was noted. An ultrasound revealed enlarged ventricles. As there was no pediatric neurosurgeon in our home state, we were flown to Colorado for surgery. The doctors felt our son, Jack, was a good candidate for ETV-CPC, so we went that route, hoping to avoid a shunt. Within a month, it was clear that the ETV had failed. We returned to Colorado and Jack received a VP shunt. That was five months ago and Jack appears to be thriving. We are very aware of how fortunate we are in our misfortune (access to care, absence of other diseases or complications, etc.) but I am struggling with feelings of guilt (e.g., Our baby was healthy; what did I do to him? When did it happen? etc. etc.) and fears for the future (What challenges will he face? When will the shunt fail? etc. etc.). Can anyone relate? I’m very grateful for an association such as this, for information, advocacy, and support.

  1. Reply

    I am a #momfighter. I proud of my brave baby girl, Rumaisa. She is only 13 months now. And already had 4 brain surgery. She was digonised with IVH when she was only 2days old. And then Hydrocephalus. She was also premature. Treatment in developed country is quite soon then developing countries like Bangladesh. So it takes almost 21days to do her first surgery after diagonised with Hydrocephalus. We never knew about this untill we saw her suffering. We never thought that we will see her again after she was in ICU. But at last she is fine. Because she is brave. Because she is learning from her 1st day how to survive in this world….

    • RUCSANA MEJIAS
    • September 21, 2018
    Reply

    Please anyone have similar story my baby girl was diagnosed with hyrocephulas at 3 weeks old, she was very premature born at just 24 weeks. She is now 38 weeks, she had a vp shunt at 35 weeks. Doctors said she had some cysts around her ventricals. They have said her brain condition is very poor, she will have cerabal palsy. She won’t be able to do anything. I’m devastated please any positives. Anyone been through anything similar.

    • Elizabeth Hedrick
    • August 11, 2018
    Reply

    Back in November 2017 our son, Gagen, 12 years old started talking about his butt bone burning. Took him to a chiropractor for eight weeks with no relief. Then the back and butt pain became constant and he was persistent that his back hurt. We took him to the orthopedic surgeon in March 2018 thinking it was a sports injury. Received x-rays, MRI, CT of the back area results showed nothing. He was starting to walk hunchback like a 99 year old man. Steroid shot was tried in the back area with no relief. Steroid dose packs were tried and he started getting relief, he could walk a little better. 6 weeks of physical therapy was ordered. They worked on his hamstrings and movement as well as tried a lift in his shoe. Results were worse on the last week of therapy from the first. He was getting worse. New symptom starts pain radiating down his legs with the back pain. We were referred to a pediatric orthopedic surgeon. That Dr was nice but stated “we need to find a smarter Dr to figure Gagens issues he couldn’t figure it out.” On paper all of Gagens results were negative but looking at him something was wrong. Lab work was done for blood mutation, autoimmune, tick diseases, etc. Still all negative. Received a bone density test still negative. Saw a physical Medicine and rehab Dr still nothing. July 25 2018 we visited with Gagens pediatrician to see what next to do, the pediatrician suggested to redo bloodwork off of the steroid. So July 28th Gagen started waking up from sleep with severe headaches but would go away by noon. This repeated every night until Wednesday August 1 I called pediatrician about headaches, I thought it might be a withdrawal from the steroid. The Dr was more concerned and wanted to see him immediately
    The next day Thursday, August 2nd he ordered an MRI on the head. Received results that same day and was asked to go to Children’s Hospital ER so neurosurgeon could see him. They had found an arachnoid cyst in his left lobe and enlarged ventricles. We we’re hopeful they found his cause of pain. The neurosurgeon fellow in the ER said the back pain was not related to the head he sent us home and his attending neurosurgeon Dr Smyth wanted to see us Monday August 6th. We go home with confusion and a child still in pain. We have more sleepless nights and getting worse with Gagen crying out and hallucinating at night. Talking out at all hours of the night. August 6th we head to St Louis to see Dr Smyth. The Dr tells us some kids have enlarged ventricles and besides the headaches gagen has no other symptoms so we probably are not looking at surgery. He said in his years of doing this he has never seen the back and leg pain associated. Dr Smyth wanted an optimologist to look for pressure in the eye that would be the deciding factor. Optamologist confirms pressure and brain swelling concerned with loss of eye sight. We went back to neurosurgeon, things changed very quickly to no need for surgery to we have the ventricles on the MRI, we have the headaches, we have eye pressure Gagen has HYDROCEPHALUS and surgery needs to be within a few days. Brain surgery is scheduled for Thursday August 9th. Day of surgery Dr reminds us Gagen could come out of surgery still with back pain. Everyone was praying and we felt deep down there was no way this wasn’t related. Surgery was over Dr Smyth comes out to talk to us. He said there was a lot of pressure build up in Gagens head when he got in there and was optimistic that it would help Gagens symptoms. Now we are caught up to 5 am Friday August 10. Gagens pain Medicine has all worn off he needs to use the bathroom nurses come in get him up. He stands up straight no leg pain very faint back pain and pain in the incision of about a 2-3 pain level.

    • Beth Hedrick
    • August 10, 2018
    Reply

    Warning Long Post Gagens Journey: Back in November 2017 our son, Gagen, started talking about his butt bone burning. We thought he had overworked it in practice. Took him to a chiropractor for eight weeks with no relief. He still continued to wrestle for the season. Then the back and butt pain became constant and he was persistent that his back hurt. We took him to the orthopedic surgeon in March 2018 thinking it was a sports injury. Received x-rays, MRI, CT of the back area results showed nothing. He was starting to walk hunchback like a 99 year old man. Steroid shot was tried in the back area with no relief. Steroid dose packs were tried and he started getting relief, he could walk a little better. Summer has now started and baseball season has started. Gagen tries for pitching for his team throwing a 68 mph fastball, but still hurting. 6 weeks of physical therapy was ordered. They worked on his hamstrings and movement as well as tried a lift in his shoe. Results were worse on the last week of therapy from the first. He was getting worse. New symptom starts pain radiating down his legs with the back pain. We were referred to a pediatric orthopedic surgeon. That Dr was nice but stated “we need to find a smarter Dr to figure Gagens issues he couldn’t figure it out.” On paper all of Gagens results were negative but looking at him something was wrong. Lab work was done for blood mutation, autoimmune, tick diseases, etc. Still all negative. Baseball season is still going strong but Gagen is no longer pitching he is in outfield or benched in extreme pain. Received a bone density test still negative. Saw a physical Medicine and rehab Dr still nothing. July 25 2018 we visited with Gagens pediatrician to see what next to do, the pediatrician suggested to redo bloodwork off of the steroid. So July 28th Gagen started waking up from sleep with severe headaches but would go away by noon. This repeated every night until Wednesday August 1 I called pediatrician Dr Aubuchon about headaches, I thought it might be a withdrawal from the steroid. The Dr was more concerned and wanted to see him immediately
    The next day Thursday, August 2nd he ordered an MRI on the head. Received results that same day and was asked to go to Children’s Hospital ER so neurosurgeon could see him. They had found an arachnoid cyst in his left lobe and enlarged ventricles. We we’re hopeful they found his cause of pain. The neurosurgeon fellow in the ER said the back pain was not related to the head he sent us home and his attending neurosurgeon Dr Smyth wanted to see us Monday August 6th. We go home with confusion and a child still in pain. We have more sleepless nights and getting worse with Gagen crying out and hallucinating at night. Talking out at all hours of the night. August 6th we head to St Louis to see Dr Smyth. The Dr tells us some kids have enlarged ventricles and besides the headaches gagen has no other symptoms so we probably are not looking at surgery. He said in his years of doing this he has never seen the back and leg pain associated. Dr Smyth wanted an optimologist to look for pressure in the eye that would be the deciding factor. Optamologist confirms pressure and brain swelling concerned with loss of eye sight. We went back to neurosurgeon, things changed very quickly to no need for surgery to we have the ventricles on the MRI, we have the headaches, we have eye pressure Gagen has HYDROCEPHALUS and surgery needs to be within a few days. Brain surgery is scheduled for Thursday August 9th. Day of surgery Dr reminds us Gagen could come out of surgery still with back pain. Everyone was praying and we felt deep down there was no way this wasn’t related. Surgery was over Dr Smyth comes out to talk to us. He said there was a lot of pressure build up in Gagens head when he got in there and was optimistic that it would help Gagens symptoms. Now we are caught up to 5 am Friday August 10. Gagens pain Medicine has all worn off he needs to use the bathroom nurses come in get him up. He stands up straight no leg pain very faint back pain and pain in the incision of about a 2-3 pain level. PRAISE TO OUR LORD!! OUR GOD IS SO GOOD.

  2. Reply

    Hi my name is jeanet m from south africa my 2year 7 months baby started to cry of a headache from april 2018 until june 2018 then she couldn’t walk properly….then the haedache became worse until i took her to hospital …..they found out that she has a hydrocephalas n cyst… so they put her a shut ……can a shut be temporarily and the child will be able to walk and do things normal? She was a 100% percent normal child before until things change on april 2018 that was the firt time she became sick ever since she was born

    • Nazmul Islam
    • July 26, 2018
    Reply

    Hi,
    Im from India my child is now 4 month old. He born with hydrocephalus. He have surgery (VP Shunt) at 45 days old. after one moth of surgery his head goes to light weight. and now again his head is heavy weight, what shall i do now, please help me.

    • Rochelle Biggs
    • May 27, 2018
    Reply

    Hi, I’m Shelly from United Kingdom….. My son Izaac is 2 and a half and was diagnosed at birth and had a VP shunt fitted at 10 weeks oldand then needed a replacement shunt in April 2017 due to an infection….. I suffer with bad anxiety and worry everyday about his condition, just looking for some help and support from parents on how to deal with his condition so i can help him to live a happy “normal” life….. Thank you…

      • Lissette
      • July 12, 2018
      Reply

      I stress and worry too. Recently i was diagnosed with anxiety & depression. My son was diagnosed at my 20 week check up. He got his shunt at just 1 week old. He will be turning two in december. His first year has been rough , a lot of hospital visits but I’ve learned the best way to deal with things, is just dont take any moment with them for granted. Give them all the love , kisses , & time you can give them.

    • jillian flynn
    • May 15, 2018
    Reply

    Hi so this is tricky at 15 weeks pregnant I was told my son had it. He was full term I never heard anything about it again. This year he was 5 and started kindergarten 3 months into the school year I had to start the evaluation process with him. In the meantime he’s been to audiologist has full hearing, a neurologist had an eeg nd an MRI. Was tested for Add and adhd everything came back normal I was told to test him for attention issues again at 7. But his evaluation for school showed he has speech and language problems he has trouble writing and letter sounds and blending into words. He also needs occupational therapy. I was told he scored extremely low on all aspects. I went to the neurologist yesterday but am so confused and unclear. Is this all tied together or his learning has no affect from it if the other test showed he was fine?

    • SJ
    • May 9, 2018
    Reply

    Hi,
    My son is 3.5 months now, at birth his head was 14in and it is 17.25in now, so our pediatrician sent us for ultrasound. Ultrasound shows that his two ventricles are enlarged. We met neurosurgeon today & he said he would like to monitor for a couple of weeks if my sons head continues to grow at the same pace or slows down to follow a normal growth curve. Anyone out there whose head growth got normal after rapid growth in initial months?

    • Darrian O'Marah
    • May 2, 2018
    Reply

    We are currently 32 weeks pregnant and have just now been diagnosed with moderate hydrocephalus or another doctor called it aqueductal stenosis.
    We are currently measuring at 15mm of fluid when normal standards are under 12.
    They said right now they don’t know much because the blood work and Amnio all came back normal. We are awaiting a fetal MRI. We have increased the prenatal DHA I am taking and praying a lot. Anyone have any similar scenarios? How is everything going!

      • Lissette
      • July 12, 2018
      Reply

      Praying for you. Ive went through the same thing. Just keep praying for your baby & no worried or stress!

    • Maje R. Aquino
    • April 28, 2018
    Reply

    Hi. My name is Maje from Philippines. Last december 8, 2017 i gave birth to a baby boy with a cs operation. It was my 3rd baby & it was the 1st time that i had a cs operation because my baby was inborn hydrocephalus baby. He was 6 months then at my tummy when i perform my ultrasound at it was found out by my ob that the baby is an hydrocephalus.we’re trying to save it by taking a dha capsule for the brain of baby but sad to say 3 weeks before my expected delivery we found out that the babys brain was getting bigger so my ob schedule me for a cs operation. My babys head size was 43 when he was out, from the normal size of i think 33-34. The doctor said that he needs the operation since the water in his brain became larger. After 1 month we decided him to have his operation but sad to say he had a pneumonia & we need to cure this first. So after 5 days from admitting him from pneumonia the vp shunt operation was performed & thank God he is safe. Now he will be turning 5 months old happy to say that he is doing good, we had a regular check up with his ob & neurosurgeon. We just had to take an extra care with our baby.
    Thank you.

    • Princess
    • April 4, 2018
    Reply

    My daughter was born 24 weeks premature with a grade 4 bleed on the brain. At 2 months old in which she was still in the NICU she was diagnosed with hydrocephalus in which she received her first shunt at 3 months. Her first shunt lasted almost 2 years before her second revision. Since then she has had 6 revisions at just now 5 years old, by the grace of God her last revision was back in Feb. of 2015. She’s delayed in potty training and walking, she also has a mild case of cerebral palsy which causes her to have to wear AFO’s (leg braces) but she’s so smart and has joy all the time. She’s touched so many lives in terms of how far she’s come and where she’s going. I pray for all the parents and children that is facing any medical difficulty. Always remember God is a healer and if he dosen’t heal he’s still there to give us strength through it. all.

    • Misty
    • March 15, 2018
    Reply

    My granddaughter was rolling over at 6 weeks old! She was sitting up at 3 months old! Then around 5-6 months old my daughter and I started noticing she stopped progressing. My daughter talked to her pediatrician who told my daughter that my granddaughter needed more “tummy time”. I rolled my eyes at that! My granddaughter slowly started REGRESSING. The dr continued with the “tummy time” garbage! And finally at about 7-8 months, the dr showed a VERY SLIGHT concern with her head getting bigger faster than it had been. She’d put in for a neurologist referral but again stated very slight concern. By the time my daughter was able to get the approval for the specialist and actually get an appointment to see the neurologist, my granddaughter was limp like a newborn and we almost lost her! We were anywhere from minutes to days away from losing her!! There’s NO REASON her dr should’ve blown her off! She had hydrocephalus and at just a few days away from 11months old, at the very 1st neurologist appointment, my granddaughter was immediately admitted to the hospital and the first of 2 brain surgeries was preformed. She is now 22 months old and while she is still behind physically and verbally, she is extremely smart and even more so…DRIVEN! Nothing will keep her down or keep her from what she wants to do or wants! She just started pulling herself up and will be walking soon! Maybe even before her 2nd bday! And while she can’t speak much yet, she knows and uses sign language to communicate! Smart girl! And ALWAYS very happy!!!

      • Ajayi modupe
      • June 24, 2018
      Reply

      Waoh this is so encouraging.my daughter has a similar story.she was ok,could sit and communicate but at 6months she lost it all.she had a VP shunt Jan 2018 which went bad and got infected.we almost lost her to the infection for over a month.she had another VP shunt in march 2018.now at 11months she is trying to make sounds and learning to smile though she hasnt regained neck coordination and her vision too is poor but with your story i am greatly encouraged

    • Tiffany Bradley
    • March 1, 2018
    Reply

    My daughter was born in August. At 6 days old I knew something was wrong but for 2 months doctors were telling me that she was perfectly healthy and okay. I was told I had a healthy fussy baby. Finally after going to the doctor on a weekly basis with concerns about her poor feeding; I noticed the increase in her head circumference and did some research online. Based on symptoms came up on hydrocephalus. I shared my finding with her peditrican and she gave me a referral to get an ultrasound. At 2 months she was diagnosed with hydrocephalus. A week later she had surgery and a vp shunt. I’m happy to say now she’s doing great. She’s now 6 months and just got glasses to help with accommodative esotropia. She looks adorable in her glasses. Today I decided to join this to get and give support. Thank you

    • Maria
    • February 24, 2018
    Reply

    Hy! My name ia Maria And i am Maria from România . This wensday I gave birth to my son Luca. He was diagnosed with mild ventriculomegaly and after the MRI and amniocentesis They told us that there is no couse to worry that the ventriculomegay will not affect our child. After I gave birth i insist to make am eco to the baby head… the verdict was hydrocephalus ( both ventricules at 19 mm). He is not feeding well and is in the neonatal intensive care.. he has no signs of brain pressure…the doctors are not concerned about the condition, they said jut needs monitoring… we insist for a neurosurgeon to de the baby but we’re always told to wait.
    From people with similar situation please tell me what was your experience…
    Does the possibility that the liquid can reabsorb in the first weeks? The Braun surgery is the only solution??
    Sorry for the long post !

    • Rose
    • February 16, 2018
    Reply

    Who can help me about my son he is hydrocephulos ? I need help.

      • Holly ferguson
      • February 17, 2018
      Reply

      Hi rose how r u I jus say ya post

    • Michelle
    • December 28, 2017
    Reply

    My daughter was diagnosed with hydrocephalus at 2 yrs old. She has had 4 surgeries over the last year. She just had ETV done at UCLA, any parents out there that has a child treated with this surgery? Just curious about long term success of this treatment. So far we are VERY happy.

      • Melissa Tubbs
      • January 5, 2018
      Reply

      My 14 year old daughter just had an ETV done 1.5 weeks ago after being completely healthy. So far, so good. She is neurologically back to her normal self if not better. Her hydrocephaly was caused by a tumor on her brain stem preventing outflow of csf. We have yet to follow up with her neurosurgeon to get our questions answered but if I find out more information I will let you know.

      • Reply

        Hi Melissa ,
        Kindly asking you where you did this etv surgery ? As I have my daughter who have 15 years has the same case as your plesent daughter, I have contacted prof agazzi saviero at TGH hospital in Tampa Florida , can you advise ?

    • 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.

      • Reply

        My son Issac is now 13 yrs old and had his first surgery at 5 months. I just wanted to let you know about a situation with our son Isaac, where he had really bad headaches and vomiting and the doctors did a CT scan and kept telling us his ventricle size had not changed so it wasn’t a shunt malfunction. We refused to leave the hospital until we got another opinion because they had sent us home twice and he still was lethargic, throwing up, crying in pain holding his head, by the way Isaac was 2 years old at this time.

        They sent in a pediatric doctor who took one look at our son and definitely thought something was still wrong and admitted Isaac. We spent all weekend in the hospital.Once the head of neurosurgery took a look at his scans on Monday, he noticed that Isaac’s VP shunt was draining too slow causing “migraine” symptoms. They adjusted his settings and he was feeling better within 2 hours. So be careful when doctor throw out “its just a migraine” based off of the ventricle size.

        I hope your son is doing great!

      • 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

        • Sarah
        • March 26, 2018
        Reply

        Hi Sarah, would love to hear from you. One of my twins has just been diagnosed at 21 weeks & would love to hear from a parent. TIA.

      • 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.

      • Sarah
      • March 26, 2018
      Reply

      Hi Jared, wondering how you went. Am 21 weeks with twins & Baby B has just been diagnosed in the severe range. Waiting to get the amino test & MRI.

    • 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!

        • Pearl
        • July 14, 2018
        Reply

        Hi, I am Pearl.

        Am pleased for you all worked out well with your son.
        Neurosurgeon said my baby has mild hydrocephalus and wants to operate. What symptoms did your child have as a baby?

  3. 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?

      • Sarah addo
      • July 5, 2018
      Reply

      hw long do d hydrocephalus baby walk

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