Looking Back…Moving Forward: There Has to be a Better Way

Barrett OConnorIt is Hydrocephalus Awareness Month. In this week’s installment of our history series commemorating our 30th anniversary, we break from our traditional interview format and share a piece written by our current Chair of the Hydrocephalus Association Board of Directors, Barrett O’Connor. Barrett was elected chair last October and assumed the position this past January, replacing Paul Gross, who served for 2 terms. She is as an outspoken advocate for hydrocephalus awareness and a mother of a daughter with hydrocephalus.

By Barrett O’Connor, Chair, HA Board of Directors

It had been about nine years since the last shunt emergency. I guess I was out of practice, enjoying denial or just too busy keeping up with the demands of family life to be adequately prepared for our return to the emergency room.

The last time my daughter went from the ER to surgery she was 14 months old and could not articulate her symptoms. She was smiling and laughing, but she kept falling down. When she fell over backwards as I was reading her a bedtime story, I could no longer ignore my concern. After much gnashing of teeth, wringing of hands, and agonizing over whether to drag her to the ER, I decided we needed to check to see if her shunt was working. It was around 9:00 p.m. Fortunately, there was no traffic for our 60-minute drive to the ER. The nurses thought I was crazy because she did not look distressed. It took a while to get the CT and shunt series done but we knew immediately that there was a problem because the pediatric neurosurgeon resident on call arrived in the ER right away. The ventricles were enlarged. We headed to surgery in the middle of the night. My daughter’s doctor was not on call. I didn’t know the surgeon by name or reputation, and had never met him before. I was not sure how long he had been doing this, but it didn’t matter because she needed the surgery and he was the only one available to do it. I felt so helpless and vulnerable. The surgery went well and my daughter recovered quickly, but I did not.

I needed help. I turned to the Internet and found the Hydrocephalus Association. I attended conferences, joined the HA Board of Directors, attended meetings, attended WALKS, tried to meet others with experience dealing with shunts, tried to meet doctors, and held fundraisers and 5K events to fund medical research in an effort to push for change. Working with HA has made me feel like I am doing something to make the future better for my daughter and the many others going through the same or worse. That helps. Perhaps, I will be better prepared in the event of an emergency in the future.

Flash forward nine years. I have just been elected Chair of the Board for HA. On the day of the January HA board meeting, my daughter is home from school because she does not feel well. She has a headache. No fever, no sore throat, no congestion. Four other kids in her class are out sick too, so I am not that concerned. She stays home for three days and then feels better.

Three weeks later, it is a typical Tuesday morning. My daughter has an ice skating lesson at 6:30 a.m. She eats breakfast and changes in the car as we drive to school. She is bubbly and happy when I drop her off at 8:15 a.m. I am on the telephone with the CEO of HA when I get the call from the school at 10:45 a.m. My daughter has a headache that is worse than a normal headache. I pick her up and suggest we head to the ER for a shunt series. She just wants to come home and go to sleep. I give her Tylenol and put her to bed. She wakes up an hour later and feels much better. The next day she says she feels so-so. After much gnashing of teeth, wringing of hands, agonizing and a call to her pediatrician (where I hear myself tell the doctor that she had a headache that was worse than normal-duh), I call and try to schedule an MRI to avoid exposing my daughter to more radiation. I get a message that the first available appointment is one week away on the following Tuesday. This is not acceptable. I need an appointment sooner than that because I don’t want to wait over the weekend. After much effort, I get an appointment for a CT the following day.

The next day, my daughter feels better in the morning and wants to go to school. I insist that we go to the appointment to rule out any problems with the shunt. Honestly, I do not want to go to the appointment any more than my daughter does. She brings her backpack so she can go to school after the appointment. Shortly after the tests are completed, I get a call from the physician’s assistant telling me that the ventricles are enlarged and to check my daughter into the ER, which we do.

My daughter’s doctor is out of town for the day. I have never met the doctor on call. The resident wants to tap the shunt and have me sign consents. The doctor on call is in surgery and will see me just before my daughter’s surgery. My daughter is telling everyone that she feels fine. I sit there in the ER and look at her and wonder. I feel helpless and vulnerable. Did I know the shunt was not working? If so, why did I not pack a bag? Why did I not bring her to the ER on Tuesday? Why was my daughter not vomiting, lethargic, or visibly affected by the shunt problem? I realize that I am no better prepared for this day then I was for the last emergency surgery nine years ago.

I am also struck by the fact that they can now take her temperature with the sweep of a wand over her forehead. A cuff on the bicep can measure her blood pressure. A red dot taped on her finger can measure her blood oxygenation. The stickies on her chest are all that is needed to hook her up to a monitor to tell us her heart rate. She has two intravenous lines that are connected to machines that beep when a dose of medicine is completed, a line is occluded, the machine is not plugged in or the battery is running out. Yet, there is no test, no wand, no dot, no sticky that can help us figure out if the shunt is working. Instead, I have to fight my own anxieties, my uncertainties, my medical care providers and make the 60-minute drive to the ER in the hopes that I am wasting everyone’s time. There has to be a better way.

My daughter appears to have recovered very quickly from the surgery, but, like 9 years ago, I have not. I am so grateful to all of the nurses and doctors who took such good care of my daughter. We are so fortunate to have access to quality medical treatment. Yet, I just can’t get over the feeling that there has to be a better way and we need to find that better way soon.

It is my hope that you will join me and the Hydrocephalus Association to help us to find a better way to eliminate the challenges of hydrocephalus. It is also my hope that on the journey of working towards finding a better way, we can also help ourselves to be better prepared for what the future will bring.

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11 Responses to “Looking Back…Moving Forward: There Has to be a Better Way”
  1. Sara Z says:

    I so agree with Barrett. There MUST be a better way! My son, who is now 9, in the past year alone has had 6 visits to the ER because of symptoms of a shunt malfunction. Each time a CT and shunt series shows no change in the ventricles. We are now going through migraine therapy (DRUGS!) because that’s all they can think of. Like Barrett’s daughter, it’s been an ebb and flow with his symptoms every time. He’ll get worse, then get better, then worse again, throw up, visit to the ER, CT/shunt series, get sent home only to have the pattern repeat 4-6 weeks later.

    It’s incredibly frustrating, scary and helpless is the exact feeling.

    Thank you for letting me know I am not alone in my reactions.

  2. Yvonne Wilson says:

    As I read your story I could feel my pulse quicken and my stomach start to knot. I have lived your scenario too many times to count over the past 28 years with my daughter who has hydrocephalus. More often than not she did not display classic symptoms of shunt failure when she was in shunt failure. I went round and round with her world renowned pediatric neurosurgeon when her test results showed no signs of malfunction, but I knew something was wrong.

    When she was a year old we were sent home from the hospital because her test results were negative only to return the next week because her eyes were crossed. I was told that it was just coincidental that she had a malfunction the week after normal test results. Full shunt revision.

    When she was two she began vomiting after sleeping. When she was upright she was fine. Her doctor didn’t want to run tests because she acted normal when he examined her. I persisted. A shunt series showed that her tubing had become disconnected from her valve. Partial shunt revision.

    Beginning when she was 10 and lasting until she was 11 1/2, I took her to her neurosurgeon many times for tests, which were all negative. In November of 1996 he reluctantly tapped her shunt. He told me I should be happy because I was right–her shunt wasn’t working. Happiness was the furthest thing from my mind. She endured seven shunt revisions over the next three months. At one point she was sent home in a wheel chair because her balance was so off. She was having terrible vision problems. We were told to put her in the psychiatric ward of the hospital because her pain and symptoms were “all in her head.” They sure were. We took her to a pediatric opthomologist who said that her optic nerve was damaged from the pressure in her head. We immediately headed back to the ER. By this time she was running a low grade fever. She never had fevers so I knew her shunt was infected. Emergency ventriculostomy. Then she had an additional abdomenal surgery because her neurosurgeon had “forgotten” that she still had that extra tubing in her from years before. One week later she had another shunt revision surgery. Her optic nerve is permanently damaged and she continues to have strabismus.

    More surgeries followed in high school and college. She even had a pseudo cyst under her liver from her tubing getting caught and collecting fluid. Her shunt malfunctioned when she was a junior in college. We were in different cities so I packed up and moved to Austin where she attended St. Edward’s University. I left behind my husband and 12-year-old son for three months. New neurosurgeon. Shunt infection. Another neurosurgeon. Five more shunt revisions until one finally worked.

    Fast forward (in slow motion) to today. Her brain has stabilized, mainly because she is older. She graduated from college. She found a job and lives independently. She gets married next week.

    She wants to have a baby right away. And so our journey continues.

  3. Shelly says:

    Thank you so much. My daughter has experienced 2 revisions since shunt placement 10 years ago when she was 2 weeks old. Both times it was a shock to me, and I have no idea why it was. I know this may not comfort you any, but it is a comfort to me to know I have not been the only mom who doubts. Doubting the emergency, doubting the need to act like it is an emergency, doubting the doctor who said, ‘this virus has been going around’, doubting my own small voice saying this is not a virus. We move on and say that will not happen again. More doubts. This has been quite a journey and I am so blessed to have a healthy 10 year old who happens to need brain surgery once in a while. I wouldn’t change a thing. Except now I will not wait, thinking the doctors must know what they are talking about and I surely do not. Making the small voice much louder and heard is a worthy goal. Thank you for sharing this personal story.

  4. Amy says:

    This is exactly how I feel every day with my 2 year old!

  5. Susan Fiorella says:

    Thank you for sharing your story and dedicating yourself to help to find a better way. We just started our journey with hydrocephalus 7 months ago when my 3 year old son was diagnosed. I couldn’t agree more that we must find a better way.

  6. Amanda K. says:

    I so greatly appreciate this article and at the beginning of Hydrocephalus Awareness Month, I posted a brief article titled the exact same thing with essentially the same message. Our stories are very similar as I am sure they are with so many other Hydrocephalus families…thank you for all you do…I absolutely love your comment about no magic wand, sticky, dot, or test to fix a shunt…We too are praying for that day…thanks for all you do!!

  7. Carole Lee says:

    My son married a 24 year old girl. Not knowing that she was born with hydrocephalus, I noticed that she did not seem to “act normal” at times. Her parents do not talk about her condition. I know that she does not feel well and does have to take antidepressant medication. She wants to get pregnant and will come off her meds only to “tailspin” into mentally not functioning too well. I do not know anything about this condition, but, I am concerned for the both of them.

  8. amandagarzon says:

    Carole, please email or call us. We would be happy to talk through your concerns. It might help you to understand your daughter-in-law and see her strengths, as well as her challenges.

  9. Wow. For 48 years, since the day my son was born and diagnosed immediately with hydrocephalus, I’ve lived with a vague discomfort inside me 24/7. When he has a headache, or what he calls “pressure pain” or a seizure, or any other symptoms that might possibly mean shunt malfunction but are so unknown, I’m constantly in doubt about what to do, if anything. Fortunately, he’s had “only” 8 surgeries in all these years, and every time I’ve felt like everyone else who has commented here–only I never thought there might be a better medical way; I just thought I was a mother who lacked confidence. I will probably always have this vague sense of discomfort, but at least now, after hearing everyone else describe it, I know where it’s coming from.

  10. mchelle says:

    I’m glad i found an association (HA) like this one, it has indeed lightened me up – i’m not alone and thanks for many insights i read through this. I have so many questions why this illness has no end. I pity my son, Michael, now 14 years old. He missed enjoying his childhood years because of this hydrocephalus. Just recently, Michael underwent a shunt revision, which did not work, then shunt removal, didn’t work either, in 2 weeks time interval. Last weekend, he got high fever and infected again. I thought he wouldn’t be infected anymore because he got no shunt, but just the same, with or without shunt he gets infected. He is scheduled for a shunt insertion after he is treated for infection. I pray this will be the last surgery and he will be back to normal life. What must i do to prevent Michael from getting sick again? Neurosurgery in the Phils is so expensive and I’m afraid i might be forced to sell everything for his treatment. Thank you

  11. Keren Peters Atkinson says:

    Every mother with a child with Hydrocephalus can totally relate to the back-and-forth debates we have internally whenever our child is exhibiting one symptom or another. We all share in the second-guessing and the agony of living in a perpetual state of worry. We’ve had two false-alarm ER visits this year alone.

    My 14-year-old son got his shunt when he was six months old, even though he was diagnosed with Hydrocephalus before birth, when I was only five months pregnant. The doctors recommended I terminate the pregnancy. I refused. (It took six months after birth to get the insurance to approve the CT scans needed to confirm that what was evident through five months of pregnancy ultrasounds was still a problem.) Still, I consider my son (and I) to be blessed because he’s never had a shunt revision or shunt malfunction after getting his first and only shunt almost 14 years ago.

    But that doesn’t mean I don’t live in fear. I do. Every virus, flu, headache, vomiting, or other health problem sends us running to the ER. He has had dozens of CT scans, X Rays, and MRIs. He hates hospitals, even though he loves his doctors. He hates that it is so much harder for him to do his Algebra homework than it is for his friends. He really hates that he can’t play football, soccer, wrestling, boxing or participate in any martial arts, like other boys his age, because his shunt might break. Most of all, he hates his shunt.. but I don’t. I love it because it has made his life possible.

    My son prays for a cure. But I’m with you Barrett… I pray for a simple, at-home test of some kind that will at least let us know if the shunt is not working. And I pray for shunts that are more infection-resistant and resilient. And I pray for strength and wisdom for all the moms and dads who live a lifetime of fear and worry that comes with having a child with Hydrocephalus. And on my most optimistic days, I pray for a cure.

    Thanks for all that you do, and thanks to all who share their hydro stories on this site.

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