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Last week the unthinkable happened and, overnight, Children's Hospital went from an abstract concept to a tangible building of miracles for my wife and me.
Just one day after our son, Ryan Jacob, celebrated his 6-month birthday, he had a series of spasms shortly after eating breakfast. Later that evening he had another, shorter round of spasms. When he had a third set the next afternoon, we knew that they weren't simply related to a growth spurt and called his pediatrician, Dr. Manka-Black of Tonawanda Pediatrics. Dr. Manka-Black listened intently to our description of Ryan's spasms and sent us directly to Children's Hospital.
The E.R. doctors at Children's performed a full blood work-up on Ryan and ordered an immediate Cat Scan.
The initial tests suggested -- and later more conclusive testing confirmed -- that Ryan has a multi-system disorder known as Tuberous Sclerosis (TSC).
TSC affects approximately 1 in every 7,500 newborns and is caused by damage to one of two genes, which regulate cellular growth. In the simplest terms, TSC patients have a cluster of misplaced cells that affect the normal operations of the brain and often result in seizures. Ryan was exhibiting infantile spasms, which are an early form of epilepsy.
TSC can be transmitted to kids from either parent as an autosomal dominant trait, but in most cases, it is developed out of the blue.
People with TSC experience a range of severity of symptoms and resulting limitations. Some people are hardly affected at all, while others have tremendous learning disabilities, neuropsychological impairments, developmental delays, epileptic fits and autism spectrum disorders.
As you can imagine, this hit my wife and me like a ton of bricks.
Our son's development had been perfect up until last week. Full-term pregnancy, C-section birth without complications, perfect APGAR scores, excellent check-ups with his pediatrician, and on-the-money development of his motor and social skills throughout each of his six months on the planet.
We may not have been able to cope with it all, if not for the family of skilled, caring professionals at Children's Hospital. Allow me a moment to scream something at you in dramatic uppercase typeset: THANK GOD FOR CHILDREN'S HOSPITAL IN WESTERN NEW YORK!
I have a confession to make, one I'm none too proud to divulge publicly. Up until my son was admitted into Children's two weeks ago, I wasn't as committed to saving the hospital as I should have been -- may God forgive me.
That's not to say that I was unsympathetic of the fight to keep Kaleida from following through with its plans to close the venerable institution on Bryant Street in downtown Buffalo, but the truth of the matter is that I did nothing to lend a hand to stop it from happening.
When the big rally was held in Niagara Square on March 2 -- the one at which local sports icons Jim Kelly and Pat LaFontaine joined an assortment of political leaders to publicly challenge Kaleida's plans -- I couldn't find the time to show up.
When the Variety Club telethon ran that same weekend, I dropped by occasionally on my way up and down the remote control channel keypad, but never stayed long enough to pick up the phone and make a pledge.
I even back-burnered plans to contact Niagara County residents who have worked tirelessly to gain support for Children's Hospital, because I felt that other columnists in this paper would be writing about Children's and my contribution might amount to overkill.
I am ashamed of my actions on all accounts. It should not have taken the illness of my son to recognize my obligations to a blessing upon the community like Children's Hospital.
I cannot begin to describe to you what a relief it is to a parent, struggling with the news that your son has a serious lifelong illness, to know that he is being treated in one of the top pediatric hospitals in the world.
The dedication of the professionals at Children's to the well-being of their patients is unbelievable.
In our son's case, Dr. Weinstock and Dr. Duffner, two of the top neurologists in America, settled on a course of action that was swift and sound. They answered every question that we posed in great detail and instilled us with confidence that Ryan is going to beat the odds and have minimal complications.
Dr. Kellermayer, the Senior Resident, went out of his way to research TSC on the Internet and provide us with detailed literature.
Dr. Radavich of the Neurology Department stopped in often to check on Ryan.
The attending and floor doctors, especially Dr. Yusuf, were all attentive and supportive of not only Ryan, but his shell-shocked parents as well.
The nurses of the 8th floor are truly angels on earth. Trina, Cary, Peggy and friends took care of Ryan's needs and those of his parents. Whether it was keeping the baby laughing through the endless poking and prodding of needles for glucose tests and I.V. insertions, or something as thoughtful as securing an extra reclining chair and pillow for Mom and Dad to sleep on, the nursing staff tackled their duties with enthusiasm and aplomb.
In fact, the theme of enthusiasm, compassion and confidence weaves through everyone at Children's, including the nursing students interning as part of their education requirements at Niagara University and the University of Buffalo. Even Olin, the Custodial Engineer of the 8th floor, went out of his way to offer encouragement and make sure that we had all of the supplies that we needed.
Much has been written about the negative impact on Western New York should the Buffalo Bills leave when their current lease expires. As a dyed-in-the-wool fan of the team, I hope that day never comes, but I now know that losing Children's Hospital would be a much greater blow to the Niagara Frontier.
Top doctors in a variety of pediatric disciplines call Children's home, not for money or fame, but because they believe in the hospital's storied history in helping children get well and cope with their illnesses.
Should Kaleida close down Children's and consolidate it into two floors of an adult institution, many of these doctors will leave Western New York to work at pediatric hospitals elsewhere. Our children -- collectively and as a community -- deserve never to have to face that day.
My colleagues, Mike Hudson and David Staba, broke the story of the high bonus structure of Kaleida executives and Rich Newberg of Channel 4 News broadcast their story to a wider audience. Quite possibly, their diligence in digging up facts that evade other news outlets had a direct bearing on Kaleida's decision to pull the reins on the plan to close Children's and take another 60 days to reassess the matter.
While these two men have long had my professional respect for their gutsy dedication to unearthing the truth that they routinely display on these pages, they now have my undying gratitude as well, as my family became an immediate beneficiary of their hard work.
By the time you read this, my son should be back home sleeping in his own crib. His laughter should be mingling with that of my wife, to fill our home with the sweetest of symphonies. He should be having his face licked by his dog and wake up in the morning surrounded by his good friends: Winnie the Pooh and the 100-Acre Woods gang.
My wife, son and I will face the uncertainties of his future with TSC with confidence.
It is a confidence that was given to us by the people of Children's Hospital -- an institution facing an uncertain future of its own.
| Niagara Falls Reporter | www.niagarafallsreporter.com | March 26 2002 |