You’re Not Alone

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By Jennifer Bechard

Imagine how a 10 year old would feel lying in a hospital bed not knowing what is going on or where to turn to for support. With too many questions and not enough answers, a condition such as hydrocephalus can take an emotional and physical toll on any individual, especially a child. I found myself in this place when I was first diagnosed. Unfortunately, it wasn’t until the age of 17 when I realized how many people have hydrocephalus. I felt and still feel uneasy knowing that others believe they are in this fight alone.  In actuality, approximately  one million Americans have to live with this condition every day.

Having CO-Chaired the annual Detroit Hydrocephalus WALK with my mother, Denise Bechard, for the past four years, I decided meeting once a year was not frequent enough. Hydrocephalus is a lifelong condition; therefore,  a support network is needed for parents, young adults and elders year round. I knew I could not make the fear, terror or pain disappear for others, but I could share my experiences and form a network of support throughout Michigan.

The support program in Detroit took off rather quickly and the WALK expanded exponentially this past year. On August 7th, 2010 I underwent my 91st surgery due to shunt complications. Ironically, while I was heading into the operating room, 465 WALKers were taking steps to improve life in Westland, MI. Although it was heartbreaking having to miss such a meaningful event that we worked year round to accomplish, I now feel  more determined than ever to make a change.

Even though the 4th Annual Hydrocephalus WALK was such a success, just helping individuals in the state of Michigan isn’t enough anymore. I am yearning to reach out and find a way to ensure that no child grows up wondering if he or she is  the only one with this neurological condition.  My opportunity came in August, when I was offered a position as the Support Liaison with the Hydrocephalus Association. With my newfound presence in the HA, it was the perfect time to start making waves.

My vision is to strengthen our existing support groups and create an HA presence within each one. I am striving for change and my hope is to have at least one location in each state where children and adults, directly or indirectly affected, are able to gather not only for support but for awareness as well. The groups will set their own schedule, but I hope to encourage them to have bi-monthly meetings within each group, with each individual group having its own variations and special events. To help spread awareness and create research opportunities,  support groups should  involve local hospitals and medical personnel.

As a part of the Hydrocephalus Association staff, my goal will be to further expand our program nationwide. We will encourage all groups to work with  state legislature to enable them to become advocates for our members.  Additionally, we will train our own members  to be advocates themselves. As an individual with this condition, I believe it is of the utmost importance to know what hydrocephalus entails.

Also, it is important to educate those who do not have the condition so we can make hydrocephalus a household term. Currently, you mention the word hydrocephalus and people look at you as if you are crazy. I have personally come across numerous medical professionals who are not familiar with the health condition. I find this appalling and completely unacceptable.

Hydrocephalus has been the biggest obstacle I have had to overcome in my young life. I never thought in my wildest dreams I would be where I am today but thanks to my family, friends and the Hydrocephalus Association I have begun making a difference. I’ve never been someone to back down from a challenge and I am willing and ready to take on life’s next fight. I believe if we work together, as one, we can not only help each other manage the condition, but bring hydrocephalus to the forefront of public attention. The sky is the limit to what we can achieve and the advances we can materialize. I am ready to spread the word like wildfire! ARE YOU?

11 Comments for : You’re Not Alone
    • Jose Avila
    • July 22, 2017
    Reply

    I completely understand what it’s like to have Hydrocephalus; At birth I was diagnosed with the condition. As a child I the neurosurgeon would request either lab work or request MRI’S or CT scans. In 2016, I was seen one last time to be referred to an adult healthcare provider.

    • Kathie Kopp
    • October 23, 2010
    Reply

    My sixteen year old son has a shunt for congenital hydro. His first operation was when he was 3 mos. old. When he was 5 he had to have a shunt revision. Both of these operations were pretty much the most tramatic experiences of my life. Although his Neurosurgeon Dr. Rekate of Barrows in Phoenix AZ and his staff, especially Donna Wallace, from St. Joseph’s Hospital also Phoenix AZ were, and are, completey wonderful it is still an extremely difficult thing to see a child go through multiple operations. I was elated to see the information about support groups. I would love for myself and my son to get involved with something like this. We too live in a small town and don’t know anyone except his fifth grade teacher who also has a shunt. Please let me know if there is anything I can do to get involved. I was so happy to have found this website.
    Thanks much,
    Kathie

    • heather kluter
    • October 12, 2010
    Reply

    Jennifer,

    I have been reading about you for the past year – ever since my 3 week old daughter, Eva, was diagnosed with acquired hydro. She has had a great year and is turing out to be a real spitfire already! If she is half as ambitious, dedicated, driven and fiery as you I will be very proud. I hope we can work together soon. This is the perfect position for you! I am in touch with the HA and always bugging them to be more involved so perhaps we will meet or connect soon.

    Much thanks,
    Heather and Eva

    • Mary Anne Crews
    • October 11, 2010
    Reply

    Jennifer,

    Your story is so compelling and heartwarming. I can’t imagine 91 surgeries. I am a 57 year old grandmother who has a 5 year old granddaughter with hydrocephalus. I worry about her life-long condition every day of my life and only pray that she will be okay. She is going for an MRI on October 21st, 2010 to have her shunt checked. Of course, being that young and wanting to move around, she will have to be put to sleep. I worry about that, also, but will leave it in God’s hands. I live in a very small town in South Carolina, but would very much like to get involved. However, I feel as though there would not be much involvement from others. How can I help out? Thanks for all that you are doing and congratulations on your new position. They need people like you to make a “real difference.” Please e-mail me and thanks again.

  1. Reply

    Congratulations on your new position, Jennifer. I’m the mother of a person with hydrocephalus. Many years ago when the HA first put together a listing of people with hydrocephalus by region, I called people to see about starting a support group for parents. We were few and far between, and nobody was interested. I’m still interested but wonder if it’s possible. I’m sure my son would also be interested in attending a support group. So, keep us informed! and thanks for all your hard work.

    • Tracy Taback
    • October 4, 2010
    Reply

    Jennifer,
    I was shocked to read and re-read multiple times that you have had to undergo 91 surgeries! You have quite a story and I am thrilled you are attempting to get the word out about Hydrocephalus. I underwent surgery almost 3 years ago after a 4 year search for answers. I had a procedure called an ETV and have had no complications since. I’d be interested in helping you in your mission. Please reach out to me through email. Look forward to hearing from you.
    Tracy

  2. Reply

    Living with Hydrocephalus can be a challenge for many. I was well advanced in years before I was diagnosed with Hydrocephalus (in addition to an Acoustic Neuroma brain tumor). Yes, life does change, but with understanding your own personal limitations, life can progress in a rewarding way. I have found that turning to God for the next direction in life provides a clearer path to proceed. Always know – you are not alone.

    Victoria

    • Amalia
    • October 1, 2010
    Reply

    Wow- Thank you Jennifer!

    As a mother with an 11 year old child with Hydrocehpalus– your article provided inspiration, hope and a FIRE in my soul. Keep up with your words of encouragement- for those of us with younger children, you help us continue to support even when times are tough.

    • Lisa Upton
    • September 29, 2010
    Reply

    Jennifer,

    Congratulations on your new position and good luck in expanding a network for family’s and individuals to turn to. My husband was diagnosed 13 years ago with Hydrocephalus and the Neorologist decided to just watch him because it was not causing him any difficulty. About 2 years ago he injured himself while running and the hydrocephalus became more symptomatic since then. I came across this site while trying to understand the condition and what treatment options are available.

    His condiction is aceductal stenosis so he had another option instead of a shunt. He had his surgery last week and so far everything is going well. Until faced with this I had no idea that people could live with a condition such as this and all of you are proof. I thank GOD every day that we live in such a wonderful country with excellent healthcare.

    Lisa

  3. Reply

    Jennifer,

    I walked this past Sunday in Baltimore, MD. I met Ms. O’Connor and I hope we can work together to get a chapter in the Washington, D.C. area.

    I currently have been diagnosed with hydrocephalus and will undergo treatment soon. I applaud your continuous courage.

    Sandra

    • Rebecca El-Kher
    • September 29, 2010
    Reply

    I was diagnosed with hydrocephalus in August after going testing for headaches. My mother also has the condition so i was not totally in the dark. The issue of being diagnosed later in life is many things change. I find myself wondering if things will ever get back to normal because I was dismissed from work when I was unable to return after my FMLA expired.

    We were blessed in that my husband was able to get a money from his retirement early so we could manage until I was healed and could seek work again. I am getting better slowly but I am not the same person as I was. I have the constant awareness that the shunt could fail or I could get an infection, many things that could affect my life and my families. I know what I go through and then the knowledge of children having to deal with this makes my issues seem minor.

    As was said in the story You are not alone, children do not know why things happen and it must be so frightening. Adults on the other hand may not know why but we do have the life skills to cope with the unknown. I have had many challenges in my life so for me this is just one more to conquer. Remember to turn your stumbling blocks into stepping stones and you will make it.

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