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What is Hydrocephalus? And Where Can Long Islanders Get Support?

Written by Long Island  |  12. October 2011

What is Hydrocephalus?

That’s the question my husband and I asked almost 2 years ago when my twins were born.  We found out one of our twin boys, Vincent, has the medical condition known as Hydrocephalus. It’s  a brain condition in which an abnormal accumulation of cerebrospinal  fluid is found in the ventricles of the brain.  It can cause increased intracranial pressure inside the skull & progressive enlargement of the head, convulsion, tunnel vision, mental and physical disability, among many other problems.  It can also cause death.  It does not discriminate, it can happen to anyone, at anytime.   Many older people are misdiagnosed with Alzheimer’s or Parkinson’s, when really their problem is Hydrocephalus.

We wondered how did this happen, how can it be true? We were numb.  We were horrified.  We were confused.   We were scared Vin was going to die.  Luckily, this was caught just in time after his birth & the nurses and doctors were able to save Vincent’s life.  He was put on a ventilator at just 4 hours old, the next day he was transferred to Schneider Children’s Hospital  (now Cohen’s) and  had an exterior drain placed  in his forehead.  A week later  the surgeons concluded that Vin needed a VP shunt implanted into his brain to drain the extra fluid out & into his abdomen.  Now, the aftermath of what Vincent must endure for his entire life and what we must go through as his parents – but we will stay positive & optimistic for a bright future for our baby.  All I did was cry in the beginning.  Why him, why did this have to happen to him? How could this happen to my beautiful baby? 

I went back to work after my maternity leave but just could not cope, my mind kept racing: what is going to happen to my baby?   I need help, we need help, we need support and comfort.  Friends and family are great , but they really don’t get it, they don’t really, truly understand what we are going through – how could they?   Where did I go you ask ? I went to the Internet, a endless resource that was available right at my fingertips. I did a Google search on Hydro. – there were so many sites, so much information and there I found it. The Hydrocephalus Association.  I found the Long Island chapter; I sent an email and then spoke with someone from their organization.  Finally, a person that truly understands what my child and my family have been going through.  We found help and comfort within this group of wonderful people of all ages.  My husband and I are so glad that we are members of this fine Association.

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There is a support group meeting coming up on November 5th from 1pm to 3pm in the Huntington Public Library, Auditorium,  5001 Rockside Road. 

All ages are welcome at every meeting, family,  friends and anyone wanting to learn more and meet others affected by this neurological condition. 

If you plan on attending, please RSVP to Mia Padron by e-mail: teamhydrocephalusliny@hayoo.com by Tuesday, Nov. 1, 2011.  Thank you.

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This article was written by Ann Ribaudo-Santamaria, member of the Long Island Chapter of the Hydrocephalus Assosiation.

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