• Tunneled Relief

      From Rebelmommy, a Mother's Love really knows no bounds.......

      Hydrocephalus. Some of you may have heard this word, but I am guessing most of you have not. I know I had never heard this word before a Doctor sat across from me and said it. More commonly called "fluid or water on the brain" it occurs in approximately 1 out of every 500 births and my daughter has it. As many of you upon first hearing about it I had questions. What is it? What causes it? How is it treated? What kind of life can my child expect?

      Hydrocephalus is caused by the build up of CFS (Cerebrospinal Fluid) a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain. The causes of Hydrocephalus are not really well understood, most of the time it occurs from inherited genetic abnormalities or nueral tube defects. It is most often treated by surgical insertion of a shunt. A shunt is a flexible but sturdy plastic tube. A shunt system consists of the shunt, a catheter, and a valve. One end of the catheter is placed within a ventricle inside the brain. The other end of the catheter is commonly placed within the abdominal cavity, but may also be placed at other sites in the body such as a chamber of the heart or areas around the lung where the CSF can drain and be absorbed. A valve located along the catheter maintains one-way flow and regulates the rate of CSF flow. Shunts are not perfect and have been the recommended course of treatment for Hydrocephalus for about 60 years and have changed little during that time. It is, in my opinion merely a band aid but since we have this band aid little funding is available to research a better alternative. Shunts become infected in 10-20% of time following it's placement and 10% of shunts fail every year resulting in more surgeries for the person with them. Hydrocephalus poses risks to both cognitive and physical development, and if left untreated progressive hydrocephalus may be fatal, however, many children diagnosed with the disorder benefit from rehabilitation therapies and educational interventions and go on to lead normal lives with few limitations.

      For me, personally all of this information was scary and yet reassuring. My daughter could lead a normal life, however we would constantly have to watch for failures of her shunt, and limit her activities to things that did not stress her shunt line. My daughter is thus far a healthy happy 10 year old, but everyday the worry that she will have to have her shunt replaced is a vivid reality for us, as it is for parents, sisters, brothers, grandparents and friends of people with this condition. I am not much of a writer, but wanted to just take a moment to tell you about this condition, as odds are at some point in your lives, just going about your regular routines you will encounter someone with it. Thank you for taking the time to read this. Please feel free to contact me and ask questions if you like.
      Comments 13 Comments
      1. Islandgirl's Avatar
        Islandgirl -
        Much love to you and your beautiful growing family!
      1. dani3d's Avatar
        dani3d -
      1. screencraft's Avatar
        screencraft -
        I have had very dear friends with a son with this condition, rather severely. He was a lovely child, always beaming with joy, even though he mostly lived in his own world. So I do understand, but I think you wrote a very eloquent description, really well written actually - so don't be down on your talents! ... Also, I have followed you as one of my favourite character creators for several years now. I love your work!

        Have a fabulous holiday season, and thank you for all the beautiful work you do, and for sharing with us so openly.
      1. SndCastie's Avatar
        SndCastie -
        You have our prayers and love to you and your dear little girl {{{HUGGS}}}
      1. mrwizard1024's Avatar
        mrwizard1024 -
        Our prayers to you and your family. On this website devoted to uses of technology -- I note that today's technology has improved so much that a condition a hundred years ago that would have been fatal is today manageable. Let us also give prayers of thanks to the doctors, nurses, scientists and engineers who have made this miraculous technology possible.
      1. nitab's Avatar
        nitab -
        Thank you for the information. I, for one, had never heard of it. I'm so glad your little girl is doing well, and I wish her and your family the very best.
      1. seliah's Avatar
        seliah -
        I have a cousin who was born with this condition. The shunts in his case did seem to help, but he is one of the ones that experienced a failure with it - twice, actually - once at 4, and once again at 9.

        He does well these days. Just got married! LOL

        So, yes, some of us are familiar with your daughter's condition to some degree or other. I had heard the term floating about many times over the years, and even more frequently surrounding my cousin. It's not an easy condition to deal with and the uncertainty is a killer at times.

        If you talk to Mike (my cousin's first name lol), he just tells you that he takes everything one day at a time, is grateful for what he's got and what he's had, and worries about tomorrow, tomorrow. He turned 23 over the summer.

        Do not throw your writing skills to the wayside. I think you did an excellent job saying what you had to say in the original post, RM. Very eloquent and yet very simple (as in down to earth) and understandable by a layman who's never had to deal with the condition, nor heard the term. You did good with it, IMO.

        Good luck to you and your daughter. I hope everything stays well for you both. Have a happy Christmas.

        ~ Seliah
      1. jeanne_50's Avatar
        jeanne_50 -
        Much love and well wishes to you and your family.
        You described it so clearly that even though English is not my first language I understood exactly what your daughter's condition is. Thank you for sharing.

        Merry Christmas to you and your loved ones,
        Love, Jeanne
      1. Damsel's Avatar
        Damsel -
        Thank you so much for expressing the condition you and your family live with daily. I believe that when one family member suffers, all family members suffer and grow even closer. My Christmas wish for you and your family is that all of you are able to always maintain that closeness and love. And may this Christmas be an especially close rewarding one.
      1. natolii's Avatar
        natolii -
        I have a friend with a condition called Intercranial Hypertension. He also has to live with the shunts and other issues. He is disabled and in his 20s, so it is not an easy thing to have to fight.

        However, fight he and his family does.
      1. mldelda1971's Avatar
        mldelda1971 -
        It's very tough and stressful to know your child has a pre-existing condition from birth. Upon hearing the diagnosis everything seems scary. You wonder if you can handle it? Will your child be safe? Will they lead a normal life? What happens when they become an adult, will they be responsible enough to take care of themselves, etc. My son was born with his pituitary gland not working. I can relate to the worries you are facing. Even now that he is 18 yrs old and have led pretty much a normal life, albeit the daily medications and injection he takes to maintain his good health. All you can do is be there for them and pray that as years pass by, medical technology for your child's condition improves. May God bless you and your daughter.
      1. ericwalters's Avatar
        ericwalters -
        Wow. My heart goes out to you and your daughter. I wish there was a better treatment.
      1. im1stsherry's Avatar
        im1stsherry -

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