Holding Out Hope

My daughter has beaten all the odds throughout her 13 years on this planet.  She's a true champ, one of my best friends and my hero.     

Up until late 2007, early 2008, she progressed so much that she could walk, dance, stand and jump with just a little assistance.  This was due to intense interventions and therapy all throughout the United States and Canada.  In 2008 though, everything went wrong.  

India spiraled downhill before my eyes and the worst of it wasn't witnessing India's bitter disappointment as she tried in vein to make her body work.  The worst of it was the pain that ravaged her.

As a father, this is horrific to witness and the helplessness can't be properly described. Sometimes late at night, the pain gets so bad that India asks me to hold her on my chest as we are lying down.  She curls up in the fetal position while I rub her back and legs to relax her little body and hope to alleviate the pain. 

We’ve gone through a series of doctors, all of whom have good intentions.  But despite the best of intentions, some of the doctors have been very wrong.  In fact, several of the suggestions from Physicians could have caused India a lifetime of intense chronic pain and infection. 

Fortunately, I’ve been at this for 13 years now and am wise enough to know to question everything.  We did some research and found a world-renowned doctor in Summit, New Jersey who specializes in working with children with disabilities.

We recently made the trip from our home in New Mexico to New Jersey.  Our visit with this doctor was beyond belief.  For the first time in a very long time, I felt overwhelming hope and happiness. 

This new doctor was the first to not want to do intensely invasive surgery.  He explained in detail what the bleak outcomes would be if we allowed India to go under the knife and saw of the surgeons.  Keep in mind, the previous surgeons wanted to saw off the top of my daughter’s femurs and pack the leftover void with some sort of substance in the hope to keep the remaining femur from pushing its way through the muscle and skin; leaving bone exposed.  This new doctor talked about the infections and pain that would be caused from the plethora of screws and hardware that would have to be attached to India's bones. 

So he we sit, excitedly preparing and patiently waiting for September 27^th, the day of the new doctors outpatient procedures.  My little girl will have what’s called an Alcohol/Ethanol Chemoneurolysis to take away her chronic pain in her hips. This is procedure where the nerves that are causing my daughters pain will be treated with a solution that deadens them.  She will then have a Soft Tissue Lengthening to loosen up her hips/legs.  And finally, my baby-girl will receive a Transtympanic Neurectomy and Chorda Tympanotomy.  This procedure eliminates her excessive drooling.  India is absolutely beautiful and currently has 2 boyfriends.  I can clearly see her embarrassment when she drools in public so this procedure should really help her self esteem.


I’m feeling like I can see the light at the end of the tunnel right now.  I’ll let everybody know how it goes at the end of this month.


On a side note, I have to admit that we are incredibly fortunate to have good insurance.  Just the doctors fee for the Transtymapanic Neurectomy is $9,000.00, not including hospital fee's.  The entire bill will exceed $40,000.00.  I feel so sorry for those parents who don't have insurance.

The following are 3 of the 4 stories of what happened to my daughter that left her with Cerebral Palsy:

http://donniebrainard.blogspot.com/2010/04/our-day-in-hell-part-1.html

http://donniebrainard.blogspot.com/2010/04/picu-our-day-in-hell-part-2.html

http://donniebrainard.blogspot.com/2010/04/circle-of-friends-our-day-in-hell-part.html

India Walking On The Beach 2007

India Standing 2008

India Skiing 2009

"2nd Opinion"

By 2011, India had been spiraling downhill at a very rapid pace. My little girl went from standing and walking assisted, dancing, sitting on her own and almost completely pain free to not being able to walk, stand, sit, dance and in constant pain to the point of not being able to attend school for a full day. Here is a video that shows India's gains and losses.

This has been a terrible experience for all of us, the helpless feeling as my daughter cries in pain is chilling.  Either Vikki or I were up in the middle of the night, every night trying to comfort India.

Until 2011, we had been putting our faith in a pediatric orthopedist from our home state.  This physician's bedside manner was rough but I believed this doctor was focusing on India’s needs, the "whole picture"; not just slice and dice.  This doctor said our only real option to reduce India’s hip pain was a very intense surgery called the McHale procedure.  To describe this procedure in the simplest way, they cut off the top of the femurs, leaving a void in the upper thigh that they fill with fat from other areas of the body.  This didn’t set well with us, something was very wrong.  In addition, this doctor put my little girl on a monthly Pamidronate infusion.  This wasn’t a pleasant experience and India was clearly not happy about it. The infusions made her sick and we saw no positive results. We were confused and scared.

As luck would have it, my wife came across a world renowned physician in New Jersey while reading published material related to cerebral palsy.  This doctors writings were absolutely amazing. I felt a new sense of hope with each word I read.  We immediately made the decision to book a flight to New Jersey and meet this man.

Our meeting was fantastic and to say I'm elated would be an understatement.  This doctor, Dr. Roy M. Nuzzo, was hands down the most knowledgeable, no bullshit physician I've ever met.  He took his time, hyper focused on us and was very concerned about the "overall picture" of India's life; she wasn't just another patient.

Dr. Nuzzo told us that the procedure that our doctor wanted us to do, McHale procedure, was not only inappropriate, but it would cause my daughter a lifetime of pain and infections. When I asked about other "replacement" surgeries, he didn't pause for one second with his response; NO.  Unlike other doctors who were willing to put my daughter through a year of traction/recovery, certain pain and no guaranteed outcome, he went the opposite direction. Dr. Nuzzo gave us an outpatient option that would take away India’s pain and allow her to get on with life and being a kid.

The first procedure he recommended was called an "Alcohol Block".  This is where the nerves causing the pain are treated with an alcohol solution that deadens them.  This lasts anywhere from 1 to 10 years or more.  Then he recommended a series of "Soft Tissue Lengthening" (My daughter had this once before).  I asked if India could do the things she loves after the surgery like standing and dancing.  Dr. Nuzzo told me that his instructions post surgery will be "let India get on with her life". Those were the sweetest words I'd heard in a long time.

Dr. Nuzzo also spent a long time explaining to me why the infusions my daughter was getting are not only useless but harmful.  He said that India’s previous physician should never have started these treatments, there was no reason and some of the outcomes that were promised were 100% false. There I sat feeling

I booked my child’s surgery on the spot.

I was incredibly thankful that we came across Dr. Nuzzo and especially after all we’d been through with India, I was once again reminded that doctors are "educated guessers" and I should never hesitate to do my research and get a 2nd opinion.

Dr. Nuzzo can be found via his website: http://www.pediatric-orthopedics.com