Teens Take Charge – Olivia’s Story

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My name is Olivia, I’m 14 and have been living with hydrocephalus since birth.

I was born at only 29 weeks, which caused a bilateral grade II intra-ventricular hemorrhages (also known as brain bleeds), which developed post hemorrhagic hydrocephalus (excess spinal fluid in the brain). I underwent surgery to receive my first VP shunt at 10 months of age. A VP shunt is a system that drains the excess cerebral spinal fluid from my brain to my abdomen. Many children, after they receive a VP shunt, only need to return occasionally throughout their lives to have shunt revisions as they grow.

Unfortunately, for me, I have had to suffer my entire life from complications with my VP shunts resulting in the 80+ brain surgeries I’ve had to undergo to try control some complex medical issues.

Some of those issues are Cerebral Palsy, Chiari decompression, deadly allergies to literally every antibiotic you could think of, latex and adhesive, and countless medications, horrible infections like the MRSA Staph infection I had at the age of 2 following a shunt revision, in which I remained in the hospital for over 200 days for.

I do my best to be a normal, active teen when I am not in the hospital, or at home suffering from excruciatingly painful headaches. I swim, play soccer, hockey and softball. I am an honor student on my junior high ninth grade class, also I am a member of the Youth Advisory Council (YAC) for Children’s Hospitals and Clinics of Minnesota. I stay pretty busy.

That’s my story, tell me yours.

20 Comments for : Teens Take Charge – Olivia’s Story
    • Nigel Ackers
    • April 30, 2019

    Hi my name is Nigel.i am 56 years old.i live in Auckland New Zealand.i was born with Hydrocephilus.my first ventricular shunt was put in at 5 weeks old.it was in common back in those days.ive had many revisions over the years.i recall up to 28.when i was 30 they replaced it for a new one.it does affect my memory on a day to day basis.i gave up work 7 years ago to settle down.hope to hear from you soon.Nigel Ackers

    • Douglas Hughes
    • February 8, 2019

    I was born wit hydrocephalus in 1966. At that time, little was known about it. When I was born, the doctor told my parents that I would not live long. If I did, I would never walk, talk or be able to feed myself. My mother took me to another doctor. Although I spent the better part of 18 months in the hospital, I did eventually come home.
    Over my lifetime, I have had many surgeries. My last one was the 20th. I also started having seizures in 1983. The seizures have been controlled with dilantin. I will be on it for the rest of my life.

    In my life, I did walk and talk at a normal level. I graduated from high school, went to college and led a mostly normal life.
    I never had much of a social life and stayed single my whole life.
    The hardest part of hydrocephalus for me is the memory problems.
    While my short term memory has never been the best, it was OK.
    It was not until my last hospital stay in 2005 that I started having memory problems so severe that people started commenting on them.
    Since then, I have not been able to hold a job. I often wonder to myself what I did that was so wrong to let me survive my last hospital stay.
    If this is all that my life is going to be, I pray that it ends soon. While I would never take my own life, I cannot bear the thought that I will live several more years like this or worse.

    • Charmaine
    • December 10, 2018

    I was shunted in 2014 due to severe Hydrocephalus. I just thought you had the op and that was the end of it.
    The last year I have been suffering severe nerve pain from waist down, confusion and times where my legs become heavy and cannot walk. After a year of not being diagnosed doctor are now saying it could be possible that my shunt is malfunctioning. Can anyone relate to my symptoms or help ??

    • Zimkita
    • October 24, 2018

    Hi I am Zimkita Vusani 28 years I had my VP shunt 2 weeks back I am so confused scared and angry it feels like my life is over

      • Lakisha Harris
      • November 14, 2018

      Hi Zimkita,

      We understand that this can be a confusing and overwhelming time for individuals as they learn to live with the complexities of hydrocephalus. If you would like to speak with someone who has been through what you are going through, please submit a request to be connected to one of our peer support volunteers https://www.hydroassoc.org/communities/hydrocephalus-connect/.

      All the best,
      Support and Education Team

      • Emily
      • November 30, 2018

      Hi Zimkita, I’m 13 years old and I was diagnosed with Hydrocephalus when I was 6 months old. I recently had my tenth brain surgery and I’m an honor student, cheerleader, band student, and I used to play volleyball. Keeping a positive attitude always helps me with school and sports! Hydrocephalus is just something unique about you. Although it is a life-threatening condition, it doesn’t stop me from doing what I love 🙂 I hope this helped you think differently about Hydrocephalus!

    • Jackline akoth
    • July 4, 2018

    Have ason with hdrocephalus and spinal bifida,first spinal surgery was done when he was seven days old and has shunt,cannot talked,sitted nor walked.he been under alot of coplications e.g infections,twitching and high teperatures.but the strggle continue.take him frequently for therapies.

    • Jackline akoth
    • July 4, 2018

    Have ason with hdrocephalus and spinal bifida,first spinal surgery was done when he was seven days old and the second surgery was of hydrocephalus putting shunt was when he was two months.I thank God shunt really help him.he is now 4years has not talked,sitted nor walked.he been under alot of coplications e.g infections,twitching and high teperatures.but the strggle must continue.take him frequently for therapies.

    • Dana Kibbe
    • June 24, 2018

    Hello Olivia My name is Dana I am twice your age at 28 and i just had my first surgery since i was 14 last month it was amazing having all that time and seemed almost as if all the issues i had all through childhood were behind me..i missed all of 6th grade having 3 major surgeries that year.id love to chat more and maybe answer any questions you may have although your 80+ surgeries to my 7im sure you could teach me plenty yourself. im just really not a huge fan of this site considering my continued outreach with no reply personally but somehow they can send me mail about events and donating(Which i do how i can when i can) but i enjoy comparing and contrasting with other people specifically those shunted or at least diagnosed at birth (Sorry NPH people) of all different backgrounds and locations Ect, if we talk cool if not just know your not alone even though it does seem that is the case sometimes I have Facebook i dont believe there are too many Dana Kibbe(s)out there haha

  1. Hi everyone,
    we have just started a charity for people living with hydrocephalus in New Zealand, here there is no support groups, and not much information. We have a daughter who was born at 24 weeks and like Olivia at the top of the page, she had a II grade bleed which cause her to have non-communicating hydrocephalus. She just turned one and she has had 2 brain surgeries and we had to fight doctors to get her transferred to a better equiped hospital where she had her 3 shunt put in about 6 months ago. We are just starting so it would be such a pleasure to have some stories shared in our page to encourage people here in New Zealand, and around the world to seek information and exchange experiences. As parents of a baby who can’t tell us what she is feeling, we try to get as much information as we can to be able to help her until she can identify the symptoms herself and express concerns.
    We would really appreciate you sharing your stories with us, together we are stronger!
    This is our page: https://www.facebook.com/hydronewzealand/
    Thank you very much and the maori here say: KIA KAHA which means stay strong!

    • Julie Wandtke
    • March 24, 2018

    Hi I’m Julie, I have had a vp shunt since August. I had a l.p. shunt for 14 years before that. I also had chiari, a brain tumor surgery and migraines. Suffered my whole life but really came out during my pregnancy. Had over 50 spinal taps. I’m 40 yrs old and work 2 jobs. Keep on fighting!

    • Rhonda
    • March 12, 2018

    Hi. My name is Rhonda. I have just had my first VP shunt surgery. I am still healing and very sore, both my head, and my stomach. I am 56 and pretty much in shock. All the headaches and the fatigue I’ve been living with has probably been the hydro. The thing, is I am only a week out of surgery, and I still feel some pressure in my head. I don’t think all of the fluid is drained out yet. I am new to all of this. I hope to learn a lot. I will probably be back on this site with updates. Good luck everyone. I feel your pain. I am praying that the doctors find answers for us.

    • Reply

      Hi I’m 52 & just had my 2 Nd VP Surgery had 6 P.Lumbar before that . I have some pressure yet also but my new shunt is programmable and said it 12 can go up to 20 don’t know if yours is? They also put in an anti-siphon device this time . Also I feel that the stitches alone cause a lot of pressure so that maybe some of what Im feeling right now post surgery , I’m Grateful the surgery is finally done as it took a previous hospital stay & 9 months total & new Surgeon . We are Our Own Best Advocators . At times I wanted to give up but coming on here & reading Everyone’s Story’s Truly is Inspiring . Hope your feeling better Rhonda would love to hear from you . Sending Love & Support to all ❤️

    • Maria
    • April 13, 2016

    My name it’s maria. Im 32 years I had a vp shunt three years ago I’m living my life very normal I have some vision problems but nothing mayor thankful to be I live thanks to the vp shunt.

      • Dayo ajayi
      • January 30, 2018

      I’m touched by your comment, my daughter is going for her first shunt implantation tomorrow at 6months, one week, three days. I’m just concerned about the health facilities of my country (being a developing one) at managing her………. So which country are you?

    • socalkid
    • November 22, 2010

    Hey everyone my name is Ryan DeSmith and I have been living with hydrocephalus ever since I was born and have had multiple brain surgeries to control this condition. I am currently 18 years old and plan on attending a four year univeristy next school year. I love all types of sports, basketball, football soccer, you name it I pretty much keep myself completly active 24/7. Sadly enough for me hydrocephalus has affected my balance ever since I was young so ive never really had to pleasure to know the feeling of riding a bike, or skateboard. For people like us with this condition, (I personally believe hydrocephalus is not a disease) However Reading everyones comments made me relise that their are many people out their that are battling this condition like the rest of us each and every day. I would just like to say that you are all an inspiration to me because Ive found myself at times saying “why me, why did I have to be born with this condition.” but now embrace my condition because it makes me a better person. My message to you is to never let hydrocephalus get the best of you. Just keep fighting, your not alone even though somtimes you may feel that way.

    • Erin Smith
    • November 15, 2010

    My name is Erin Smith and I’m a senior in high school. Early on this year I was involved in a serious car accident. I was in the hospital for 36 days and was gone from school for 2 more weeks after that. I developed hydrocephalus while I was in the hospital. I was supposed to leave the hospital 14 days after my accident, but with the complications of this I ended up in ICU and was there for 2 more weeks. After multiple days of the nurses telling me that I would never be anything more than a Wal Mart greeter, my mom (who worked in a rehab hospital for 8 years) told the nurses that she wouldn’t wake me up to eat or take my medicine until the neurologist saw me. That’s when they took me to ICU. I now have a VP shunt in and have found out that there are strong headaches with it. They have had to adjust it multiple times but nothing has made the shunt to the right point and I was told that I would have to live with the headaches all my life. I’m now in school and will graduate on time despite missing the whole first quarter of my senior year. I plan on attending a 4 year college and go into either Therapy or medicine to help find a better cure for this and help others who have Hydrocephalus.

    • Elizabeth Heim
    • November 7, 2010

    My name is Elizabeth. I’ve been living with hydrocephalus since I was one, and have had three brain surgeries to correct it (The last one I had was when I was 2). I am currently 14 years old, and have a VP shunt. I am an honors student. I’ve been cheerleading since I was 10, and my team qualified to go to a national competition in Michigan. I sometimes feel akward with my hydrocephalus, especially when people notice the scar on my neck from my VP shunt, but I do my best to be a normal teenager when I’m not going for a catscan, MRI, or visiting a neurosurgeon. My favorite sports, besides cheer, include Ice skating, and gymnastics. No, I don’t actually ice skate, but I used to, until I fractured my elbow. That’s when I turned to cheer. However, I do actually practice gymnastics, for cheer purposes. I am currently a member of my high school’s speech and debate team, and the Key Club. My goals for next year are to stay a member of speech and debate, but become a member of the Spanish Honor Society, as well as the National Honor Society. My main goal in life is to be a Harvard Graduate and become a successful lawyer. On the other hand, I am very knowlegeable about fashion (I know designers, and I’m very good at matching colors and patterns). I think I would do better as a lawyer though.

    • Lydia Gonzales
    • November 6, 2010

    Hello, my name is Lydia Gonzales. I have struggled with hydrocephalus pretty much all of my life, and have already had 14 surgeries to correct it. I was very thankful to find out about this site and for the opportunity to learn about other people and their struggles with hydrocephalus.
    I certainly have had to overcome several obstacles in my life due to my condition. For example, before I started my freshman year of high school, I had to put up with constant, prolonging headaches and vomiting episodes as well as vision loss, due to a shunt malfunction, so I had to go to the hospital for an operation. Afterwards, fluid began leaking through my stitches, so I had to have another surgery. Just when I thought I was recovering, my vision began to deteriorate more and more to the point where I became totally blind. After a third surgery, I was completely bedridden since my shunt had to be externalized for the purpose of observation. I did have to have a couple of emergency surgeries afterward because I was visually hallucinating, and my shunt got clogged with a bunch of protein and fiber-related clumps from who knew what. After a final surgery, when my shunt was finally replaced, although I came down with Bell’s Palsy afterwards (temporary paralysis of half of the face), I was able to return home. It all took place within a month, but thankfully, I survived.

    • Joy Motte
    • October 30, 2010

    My name is Joy. I am 36 years old and have a VA shunt. The distal end goes to my aorta. I did have a VP shunt, but that got badly infected and had to be drained and then converted.

    I have lost count of the number of surgeries I have had for this and neuro fri broma tosis. I was diagnosed with hydro and shunted when I was 4 months old. My hydro was caused by a thiest in my cellebullum that I was born with.

    I graduated from high school in 1993. I graduated from college in 1998.

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