By Grammy Shirley

December 23, 2002

This is information regarding Jennifer Deprizio’s many hand surgeries.

Before Jennifer came to live with me in 1997, she had been through many hand surgeries to open the digits and to keep her hands from mittening.

Jennifer’s hand before surgery

None of them worked and the reason for this is lack of care. Lack of constantly using the braces and/or splints that Dr. Dell and the therapist made for her, to keep the skin from growing together and the webbing and mittening.

At this time in Jenn’s life the braces/splints were rather crude and they were harder than now. Now they are made of “Odoform” and other softer substances.

Odoform is like putty, which is shaped to the hand during surgery, and remains soft, but firm.

When Jennifer came with me in 1997 both hands were webbed and mittened. She had “pinchers” so that did enable her to use her hands a bit, but not much. Jennifer had her first hand surgery while with me in June 1998. Dr. Dell at Shands Hospital in Gainesville, Fl. did this as an outpatient. She had gas anesthesia. Jennifer did not have to be intubated as she was always going to be lying on her back. They put an excessive amount of Vaseline on her face so the mask would not disrupt the skin. It worked very well.

Jennifer’s hand after surgery

We stayed in Gainesville in a motel for a week, as Dr. Dell needed to change her bandages every day and check to see if the brace was in place. We live about three hours from Shands. Jennifer was uncomfortable when I brought her back to our room, but was still under the effects of the anesthesia and pain medication, so slept until we had to go back the next day. The bandages did drain a lot and that is normal. That is why the bandage needs to be changed every day for a while, also to watch for infection. Jenn was on a strong antibiotic to guard against infection.

Dr. Dell and Ruth, the therapist, made a brace/splint to fit Jenn’s hand while she was under so as to keep the digits separated and to stretch the hand. They also put “pins” in her fingers with a top to circle the pins, so to keep her fingers apart and straight. It took about three weeks before the pins could come out. Dr. Dell did this in his office. It was a little painful, but they gave her a bit of sedative while doing this. Sometimes the pins want to come out by themselves, and this is good.

Then Jennifer began therapy to measure, stretch and work the fingers and hand. This took about two months. The total healing time was approximately three months. Once the pins were out it healed fast. Jennifer wore her brace made of Odoform day and night.

During therapy they would make a new brace to fit her healing ever changing hand. We wrapped the ABC wrap and put the brace over the wrap. It works wonders and we still do it.

Jennifer’s hand after surgery, wearing her class ring!

Some people do not want to use the ABC Wrap but we firmly believe in it. All EBers are different so it may not be for them. Jennifer had all of the ordinary complaints; i.e., it hurts, it’s uncomfortable, it isn’t working, I don’t like it, but I persisted. Now, she hasn’t worn the brace in the last six months, unless her hand is tired or hurts for some reason, but we still do the ABC wrap and Jennifer actually wraps her hands herself since we have had the right hand done.

The right hand was done in May 2002 at Shands with Dr. Dell. Instead of gas anesthesia this time they gave her a block of the arm and Jennifer was awake and watched most of the surgery. Wow!! Dr. Dell thought the fingers were atrophied into place. This would have meant extensive surgery with the ligaments, etc. When he de-gloved Jenn’s hand, the fingers just uncurled one by one and Jennifer was so excited she just shouted, my hand, my beautiful hand.

Dr. Dell followed the same procedures as the left hand, pins, brace, etc. and we stayed at the motel for approximately four days. Again Jenn slept through the most painful part, was on pain medicine and antibiotics. This surgery healed much faster as the hand was not as bad as the left hand. Jennifer only had to wear the brace on her right hand for about three weeks, but we did the ABC wrap about one week after the surgery, and then put the brace on. She only needed about two weeks of therapy, as she knew she had to exercise those fingers, and she did. It is all in helping yourself heal.

Jennifer with Dr. Dell

The EBer MUST do what is necessary or the procedure may not work, or it may not work as well. With the experiences of Jennifer’s hand surgeries, I am convinced the child should be old enough to follow directions, and be willing to go through the steps to help them heal and have a workable hand. As you can see by the pictures, Jennifer hand does not look like mine, or yours without EB, but it is very functional and she can do anything she wants with them.

Jennifer is a sophomore at Brevard Community College (BCC) and is majoring in WebDesign/Desktop Publishing. Her fingers fly on the keyboard and her speed is up to 60 words per minute and gaining. She is an accurate typist and does not look at her fingers while typing – well, most of the time :-). She wears her school ring on her finger on her right hand. Something she has wanted to do since she graduated from high school… She wears other rings also.

It has been since 1998 since the first surgery and her left and right hand look wonderful. Jennifer is a trouper.

Grammy Shirley

P.S. If you are going to use the ABC wrap after surgery, never put the 1″ gauze against the fingers without using lubricated Vaseline gauze. It will stick to the fingers and pull the skin away, causing more webbing. I do not mean the insult intelligence; just want to make sure you are aware of this…