For EB Awareness week this year I want to take a moment and give everyone a rundown of the horrible side effect of RDEB and the mittening of the hands and how I found out about it and how we dealt with it.
Of course hindsight is 20/20 as with everything else with EB. When Nicky was born the information I was given and I found did not mention this particular problem. The internet in 1996 was worthless. The only thing I was mildly aware of was that the hands “could” web. And by “web” I thought the fingers could web together or develop skin between like a duck’s feet. I know… crazy, but having no contact with any other EB family or Doctors that knew anything concrete about EB, one is left to their own devices and imagination.
It wasn’t until we were finally able to visit the main EB doctor at Stanford when Nicky was 9 months old, (delay due to one of our many insurance nightmare instances I describe in the book Butterfly Child) when he showed us Nicky’s index finger already contracting, demonstrating it by not being able to straighten it at all, that I became absolutely desperate to do “something”. I could not believe that my son, at 9 months old, was already losing his hands. 9 MONTHS OLD!!!
So I went to that new medium called the internet and searched long and wide for answers. Like I said, the internet at the time… pfft. Finally I came across an old post on a rarely used EB board from a mom who stated she wrapped her kid’s hands with success. I was able to meet her and she showed me, but at the time, in the midst of a bankruptcy and nobody helping me pay for bandages, I just couldn’t afford them. As it was I was washing, rerolling and reusing bandages! So, I went to the next thing. I resorted to put a greasy cream on his hands daily and do daily fingers stretching exercises. That worked for a while, but the moment I stopped the hand became so stiff he would not use it at all.
At this point Nicky was nearly 2 years old and his hand was so useless we decided to do a surgery and we wrapped it ever since.
Of course this is just a “morsel” of the bigger story I recount in the book, but one’s thing for sure. If I had known about this issue from the start and the bandages had been covered by (GASP!) the insurance as they are today, Nicky would have much better use of his hands, which, while useable, remain quite small for his age and extremely fragile.
Nicky has had 3 surgeries on the left hand and 2 on his right hand total. We do not foresee doing anymore at this time. The first 2 surgeries were vital for him having hands at all as far as I am concerned. Mind you, I was vilified endlessly for them, the names I was called I will never repeat here. However, without those, he would not have any fingers to speak of. The surgeries that came afterwards were done upon Nicky’s request. Despite the criticism people laid upon my lap, Nicky has thanked me profusely for preserving his fingers and the reason why he wanted other “tweaks” is so he could use them better. So, who cares what other people “think” and “say to me” when Nicky is thankful? He’s the only one that matters.
So, if I have any advice for anyone… do what you need to do and dismiss everyone’s criticism and put downs. They don’t live your life, they don’t pay your bills. Do what’s best for yourself and for your child, nobody else matters.
What I am posting here are photos of Nicky’s hands today. We just took these photos last week.
He loves his fingers and cherishes the fact he has them to begin with. We are planning to do a video with how we do bandages to further preserve functionality and prevent further surgeries.
His index finger is a little raw at this time. His skin is incredibly fragile. Even so, he’s able to type and play videogames when his fingers are wrapped. His middle finger on his right hand is twice as long as the other fingers but cannot bend well.
This is a close-up of his left hand. The last surgery was on this hand 2 years ago and the only thing they did is “fish out” the pinky (because it caused him a lot of pain) and took out the thumb wide so he could “grasp” things. So far so good. The “white” flakes are remnants of the concoction I use, which include 40% diaper rash cream.
Thank you so much for your interest and support!