They Cut Open My Head
By John Sharify
SEATTLE - Under the subject line on the e-mail, a question from a viewer! I knew Lori's question wasn't rhetorical. It's a question that deserves an answer!
It begins 'Why?'
"Why does a two year old boy have to have 17 brain surgeries just to stay alive?" That boy is Noah. Lori Poliski wanted me to know about him, and about her own son, who has had four brain surgeries.
William is 20 months old. He can't walk yet. He may never walk she tells me, because of what's happening in his brain. You might know it as 'water on the brain.' It's a condition known as hydrocephalus, a neurological condition.
"It means that the 'water tanks' in their brains are big," says William's doctor Tony Avellino, a neurosurgeon at Seattle's Children's Hospital. Dr. Avellino has an answer to Lori's question, why so many surgeries?'
The shunt valve he was holding in his hand offers part of an answer. Shunt valves are surgically implanted into the brain to drain the fluid.
"We do have a treatment but shunts are like used cars. They actually break down," says Dr. Avellino. That's why many times so many surgeries are needed. Some children might have to have two or three repairs. "Other kids, 30 or 40!" says Dr. Avellino.
It's not what any mother with a child who has hydrocephalus wants to hear. But there is hope. "They cut open my head," says Sherman Alexie, filmmaker and author.
Alexie wants mothers to know there is hope. After all, he spent his first seven years of life in and out of hospitals with seizures. And now?
"I'm a success story," Alexie says. The filmmaker plans on producing a documentary about hydrocephalus. "I'm fine now," Alexie insists.
Hopefully one day soon we'll be able to say that about the boy who's had 17 brain surgeries. Noah and William. "He's lucky to be here."
We're lucky to have him," says his mother Lori.
Children's Hospital in Seattle just approved $1.5 million for hydrocephalus research. That's considerable considering what Lori Poliski tells us: "The government gives just $600,000 a year for this condition compared to $300 million for diabetes research!"
For more information about hydrocephalus research and what you can do to help, go to http://www.hydroresearch.org/
Also, if you want to learn more about Noah, you can visit the web site his family created for him: http://www.noahslifewithhydrocephalus.com/
I want to join the hydro association and I want to register Syafiah's story with HSB itself and Supporting Malaysians With Disabilities program so that many people can benefit from the story especially in my country.
I've read a story of a hydrocephalic daughter recently in Metro (I'll scan the article). She's 6 years old and couldn't walk until today. I guess our society is not well aware to the successful stories of shunt recipients such as kak Rosliza and her son (the one I met in ENT clinic) and even there's a boy in our village who is a shunt recipient after he's 2 years old. Now he can walk at the age of 5.
There's a case of a mother who insisted not to plant her little girl with the VP shunt during Syafiah's stay in NICU. I tell you.. there's no alternative cure for this condition. And in fact, she's risking her girl's life by doing so.
Mungkin ada yang takut sebab ia melibatkan pembedahan dan runtunan hati seorang ibu mengalahkan minda yang terbuka. Let's not be afraid to help your own child. Don't let your emotion kills you and your daughter's future.