Friday, June 12, 2009

Inspirational Story..

Readers & parents,

This is an emotional yet inspirational statement quoted from a parent who had a clubfoot child and the child recently graduated from FAB.

From Nicky Dugan..

I have been looking forward to writing this email for four years. Not to gloat, but to encourage all of you who might be in the earliest stages of treating clubfoot and let you know that, yes, some day this will all be over!

In 2005, I went to my 20-week ultrasound for my second child with that usual euphoria over being able to "meet" my kid. I left devastated by the news that he would have unilateral clubfoot. My uncle was born with clubfoot in World War II Germany and was treated like a pariah -- he subsequently became the village idiot. I feared the worst. I called my pediatrician on a Friday night and got no reassurances about a "normal" life - he said the treatment consisted of castings and likely surgery, with stiffness, scar tissue, and arthritis to follow. His foot would never really be normal. There were plenty of orthopedic surgeons around who could take care of all this. His only silver lining was, "in the grand scheme of deformities, it could be a lot worse."

Through my tears, I hit the Internet. And that's when I found this group. I remember reading about Martin Egbert, who made it his mission to ensure that the world knew surgery wasn't the only option for his son Joshua. I studied dozens of photos of feet and casts and bars. I read about pressure blisters and unqualified doctors whose worked needed correction. I wrote to Dr. Ponseti and asked, "Surely in this metropolitan city of San Francisco there is SOMEONE who practices your method?" No dice - we'd have to drive 45-minutes to Walnut Creek to see a Kaiser doctor outside our network. It all sounded so overwhelming. But I talked to Dr Colburn before Farley was born and he gave all those reassurances I'd been seeking... "Don't worry, just enjoy your baby, come see me when you're ready - doesn't have to be minutes after he's born. He will be fine. We will fix this. Don't worry."

I detached myself from this second pregnancy anyway - could I love a kid with a deformity the way I loved my first? But when Farley arrived, I loved and studied that sweet little crooked foot. So tiny. So unique. And then he proved to be my little trooper. On day five, off to Dr Colburn we drove. Farley fell asleep during his first casting. And his second... and third... And seven weeks later, nary a peep during his tenotomy. His foot came out beautiful, if just a little wrinkled at the ankle. But lo, when I saw those Ponseti-Mitchell shoes for the first time, I cried all over again. Four years of wearing these? You gotta be kidding me! They're torturous! Buckles and metal! How would he ever move around? How would he sleep? 23 hours a day in these things? Would he ever learn to walk?

And yet, here we are, four years later, having complied with wearing those shoes every single night and nap (except on that flight to Sydney last year - we had to draw the line!)... The pipe insulation to keep him from killing all of his and his crib. The banging and kicking as he swung that thing around. Trying to get those things into a sling and figuring out how to breastfeed. The drudgery of having to explain them to babysitters and care providers. All those strange looks at playgrounds and airport security. The hot sticky humid nights when you couldn't believe you were putting socks and shoes on your child. The comedy of seeing your kid's foot resting high in the air as he slept. The panicked moments of returning back to the house to fetch them before we drove off again to preschool. The hundreds of dollars not covered by insurance. The removal for third "Mama, I have to go potty" delay tactic of the evening. The triumph of being able to buckle those things in complete darkness. The loving care of the Mitchell family who provided us about five different pairs over the years -- the obvious commitment they have to this treatment. The PRIDE of knowing that all of this was an investment in a normal life.

And so this week, we got the brilliant news... Farley is officially 100% corrected! He has one helluva beautiful, gorgeous and normal foot. We can finally retire our trusty Ponseti-Mitchells and enjoy the unbelievable novelty of sleeping in bare feet! And I can assure you that Farley runs, walks, hops, jumps, rides his bike, keeps up with his big brother, and NEVER complains. Yeah, he's going to have a slightly smaller calf when he hits puberty. But other than that, no one will ever know a thing about these last four years or how this little super hero stuck it out without so much as any pushback.

We are full of gratitude -- to Dr. Ignacio Ponseti, John Mitchell, Dr. Michael Colburn, and ALL OF YOU for your wisdom, support, sharing, questions, answers, and reassurance. You go through so many stages on this list -- from clueless, anxious and full of questions to confident elder who has many answers and provides the comfort. Thank you, thank you.

The only lingering sadness I have is for the hundreds (thousands?) of children whose parents and doctors don't know about this miracle treatment. That the Ponseti method isn't de rigeur all over the world and that I still have to explain it to doctors. We will continue to give generously to the Ponseti International Association for the Advancement of Clubfoot Treatment in hopes that, some day, this nail will stop attracting the hammer of surgery. Keep doing what you do here -- it's the first place people discover when they get that diagnosis for their baby. Without you, this road would be dark, uncertain and very lonely.

And for all of you just starting the journey, take heart. You are doing the best thing possible for your child. You're not taking the easy way out. Swell with pride. Hug that kid. And know that it's all going to be ok. It's not really all that hard. "Don't worry."

I guess to be like Nicki, we need to keep doing on what we need to do.This clubfoot children need our attention spiritually.Good Luck to all of us!!

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