How To Make Surgilast Shirts

By Maria Oliveira

Finding a way to keep dressings in place for the upper body can be quite a challenge. Some people do well with ready-made garments made to accomplish this, such as Tubifast garments made by Molnlycke.

However, every patient is different and in my daughter Sarah’s case, these garments were too snug, especially in the arms, and hardly comfortable for her. For years I have made similar retention tops out of Surgilast or Spandage elastic retainers. The beauty of these home-made garments is that you can customize them, making the top itself or the sleeves as long as you like and you can make the neck come up higher to secure dressings in the collar/neck area. You can also make the armholes larger to provide even more comfort. Because Sarah has a feeding tube, I cut a small hole in the front to pull the tubing out and it holds everything nicely in place. You can wash and reuse these tops many, many times. (Note: I find that the Spandage brand holds up to more washes than the Surgilast, but either works well).

Cut some Surgilast or Spandage for the torso and some for the sleeves as the pattern below shows (Figure 1).

Figure 1

The size depends on what is comfortable for the person. Sarah is 13 years old and weighs 100 lbs. I currently use a size 10 for the torso and an 8 for the arms. To assemble the shirt, I stretch the torso piece over a box so that the corners of the box are sticking out through the armholes (Figure 2).

Figure 2

This makes it very easy to attach the sleeves. To attach the sleeves I stretch them over the corners of the box and stitch them to the armholes using a strip of 1” gauze. I attach a safety pin at the end of the gauze to weave in and out of the Surgilast as if I were hand-sewing. Knot the 1″ gauze to finish off the underarms, and you are done (Figure 3)!

Figure 3

Here’s what the finished product looks like:

Figure 4

Mom to Sarah Oliveira (13 years old, RDEB) and David Oliveira (20 years old, EB Free).
Lives in Elizabeth, New Jersey and works as administrative assistant at Merck & Company.

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Hand Wrapping Instructions

By Lorraine Spaulding

The following illustrations are an example of a hand wrapping technique found to be helpful in the protection and preservation of RDEB involved hands. The instructions are for very small hands and some adjustments probably need to be made for larger hands. Lorraine also have some suggestions if anyone is having trouble with the thumb pulling in.

Please note: these instructions may seem overwhelming at first, but after a little practice and as your child gets used to the process, it becomes a worthwhile routine.

Keep in mind the positive results and don’t get discouraged!

Note from the webmaster: this is a graphic intense page. I recommend waiting for it to load and then print it out.

WATCH THE VIDEO OF THIS DEMONSTRATION AT THE STANFORD WEBSITE:

http://dermatology.stanford.edu/gsdc/eb_clinic/eb-videos.html

All illustrations are of the left hand.

Step 1 is an optional application of Vaseline Gauze to the palm of the hand. Use a 3″ X 9″ piece of Vaseline Gauze. Cut about 2″ off one end, then slit lengthwise about a 4″ length, about 1″ down from the top edge.

Wrap around hand with 1″ strip between thumb and index finger.

This provides some resistance from retracting.

Fingertips can be left exposed to some degree, so that tactile sensation can be experienced.

At this point it may be necessary to start a 2nd roll of 1″ gauze. Make one overlap and continue.

Views 10-19 Front of Hand

Spaces in palm bandaging will be covered by criss/cross bandaging of web spaces.

Web spacing can be randomly done. The point is to cover any open areas of the palm while

gently pulling a wrap between each web space

Be very careful to never wrap or pull too tight!

Be sure to have slight tension in web spaces.

Suggest wrapping additional 1/2 roll of bulky bandage around arm from the wrist to the upper arm. (Held by Tube Gauze) Provides padding of forearm and elbow.

Wrapping the Torso the ABC way

By Sheri Coil – with  the assistance of Brandi & Alex

The arms are all wrapped and the under-prep is done; the creams, ointments, lotions and potions are on, the non stick dressings are applied… and we are ready to start the torso.

Picture of just arms done, bare torso

We start with a 4″ Kendall Conform roller bandage (can be 3″ for newborn) and take one lap around the body. The bandage will then cross over the back and pass over the shoulder,

Pic of Brandi going over shoulder

around it to go to the back again under the armpit.

Pic of Brandi making cross X in back

Actually – it does not matter whether it starts to cross on front or back, the pattern is the same.

Picture of starting in front

It will then pass over the opposite shoulder, around it and back thru to back under armpit. It will keep going around the shoulder to the front.

Picture of it going over the shoulder to front

Now the same basic pattern will be used to make a cross X in the front; across the chest to armpit

Pic crossing chest to ap

around the shoulder and across the chest to complete the X. Finish wrapping the torso.

Pic of torso wrapped

This is the base wrap. From here are options. For light wrap, we go around the torso with 4″ J&J Sof-Kling to give more strength to body wrap. Add your padding where ever you need it for protection and absorbancy.

Picture of Alex back with padding

Finish with stretch gauze, which we will talk about later.

The heavy duty, protect the armpits from most assault method is what we use the most now. After the Conform layer, we use a layer of Kerlix.

Pic of kerlix around body

Go around the body, over a shoulder

Pic going over the shoulder

and around the upper arm.

Pic around arm

Cross over the body and around the other shoulder and upper arm. This pattern of crossing over and around should be used until we have done as much as can be covered. We wrap one layer around the rest of the body to the waist. We also put a layer of Sof-Kling over the top of this for more strength. Remember, our kids are very active and we want them really protected.

Pic all done

Stretch Gauze:

Method 1: this is a single tube sleeveless shirt. Take a piece of tube that is the length you need. Our kids use one about 15 inches long. About 3 or 4 inches down, make a snip into each side.

Pic of snipping

put one arm through one of the snipped holes.

Pic putting it on

Pass over the head, putting it into the tube end hole and the other arm through the other snipped hole.

Pic of done

Method 2: This idea came from Lorraine, Garrett’s mom. It is the super dooper keep those armpits under control method. I love it and have adopted it. It also keeps the stretch tube gauze away form the neck when you need it away, because it makes a v-neck tee shirt. Take two pieces of the torso tube gauze and about 5 or 6 inched down one side make a snip.

Pic of snip

Take the first and gather it all up with the short side of the cut towards you.

Pic of putting it on

Slip it over the arm putting head

Pic of slipping over head

and the opposite arm through the hole

Pic of putting over arm

and pull it down the body. Do the same on the other side.

 

Pic of one side done (with colored gauze so it is more easily seen) and finished

Method 3: This is for those times when you need to really keep dressings on the neck. Using method one, make your side cuts much further down. When you put it on, it will form a turtleneck.

Pic of turtleneck

Thank you Cristina.

Method 4: I devised this method because, while the way the armpits in method 2 were protected was great, it leaves a deep vee in the center chest and back where the bandages were not protected and kept under control. Take a piece of tube gauze, about body size and about 15 inches long. On one side cut a 2-3″ slit.

Pic of snips on stretch gauze

On the other, cut a 4″ or so slit. With the short slit up, pull the tube gauze over the head, with the head going through both cut holes. Put an arm thru the long slit.

Pic of putting it on

Then into the “sleeve”. Put the other arm into bottom hole and out the other “sleeve”. Now you have a crop top with sleeves.

Pic of arms done

If you finish this with a method #1 sleeveless top it will cover everything well.

Pic all done

Here’s some pics of Armpit bandages made of soft cloth:

and what they look when they are on:

They slide on like this (top) and tie up like this… (bottom)

This is a personal video of the late and beloved Sheri wrapping the armpits and torso of a child with EB (Epidermolysis Bullosa) taped at Stanford in January 1998. There is a lot of chatter back and forth, some of which is not clear as there are some children crying etc on the background (including my Nicky, 14 months old at the time) but it’s still a useful video that might help some.

Wrapping Hands & Arms The ABC Way

By Sheri Coil – with  the assistance of Brandi

The following is the way we wrap the hands (and arms while we are so near) to reduce the mittening deformity that RDEB causes.

After cleansing and debriding I use a lot of Alwyn cream or what ever else I have used before it came along.  The open wound or skinless areas get Mepital first, then Vaseline gauze.

We have had excellent luck with the Mepital preventing sticking bandages. The oozy serum stuff can drain right through it to be absorbed by outer gauze.  And the creams and ointments can get back to the wounds.  The  Vaseline puts up a further barrier to sticking.

The gauze starts on the top of the hand.  I use Kendall conform 1″.  You can see the Mepital under the Vaseline gauze.  Please note that the wounds on this arm are all self inflicted from scratching. The areas she doesn’t scratch are very clean.  I used this area to demo on because it needs the works as far as under gauzes

The gauze then goes around the thumb a couple of times, until it is wrapped and then  around the hand, over the top and around the first finger,  around it til wrapped, and around the hand to the next finger…..

After the fingers are wrapped, I go around the hand and come up through each web space.   Two going around the first way and then  an extra half wrap around the wrist to make the last one cross over the first two.  Clear as mud, huh?  Ggg

Then I wrap a two inch Kendall  Conform bandage over the wrist, around the hand one loop and then through the thumb space and on around the arm on up Coming back down the arm, I pad the armpit, elbow and anywhere bad and roll the bandage right over it.  I use Kerlix for that padding, cut to what I need.  I just roll the bandage on.

No pulling, but not loose.  It just needs to support the skin, not cut off circulation or cause mis-shaping over time.

I  use tube gauze over everything.  I do not like to use tape at all.

Here she is, all ready to go! 🙂 Our Dancing Queen 🙂

Here is the Video of the wrapping technique recorded in January 1998

The ABC Method of Wrapping

By Sheri Coil

A bit of History

Sheri Coil and her family

Shortly after Christmas one year, we received a phone call asking us if we were interested in caring for two little boys with a very rare disease that affected their skin. We are caregivers to medically fragile children and like to care for those with ‘challenging’ conditions. The oldest, Corey was 14 months and the younger brother, Alex, was only five weeks old and not yet five pounds. They had Recessive Dystrophic Epidermolysis Bullosa: Hallopeau-Seimens subtype, a rare double recessive genetic disease that affected the integrity of the collagen VII area’s in the skin. This meant that any shear pressure on their skin would cause it to lift causing blisters to form or for the skin just to peel off at the lamina densa level or in other words at full depth of skin. The fibrils that hold the skin to the flesh are made of Collagen VII are greatly compromised if not non existent. When the blisters form in an area of damage, they fill with more and more liquid and keep growing larger and larger since the anchoring fibrils were not there to hold the surrounding tissue together.

We said that we would take them but had no idea of the ‘challenge’ we had accepted. They were both hospitalized in Packard Children’s Hospital at Stanford for ”wound management”. Both children were on morphine for pain and in very poor condition. Corey had an absence of skin on about 75% of his body, his toes were webbed over completely and his fingers were encroaching his palms they were so badly mittened and contracted. What everyone failed to tell us was that no one expected them to live long enough to make it back to the next clinic appointment. Which turned out to be a good thing in the long run. We got them and only saw future. We did not concentrate on death, but rather on life! It was a year before we were told this expectation. When their little sister, Brandi, was born the next year, she also joined the family.

First Care

Care instructions were few and supplies were hard to come by at first. We were told to soak Corey every day in a whirlpool bath that had bleach and salt added. We were told not to try to wrap too much. Not to try to wrap to protect them, that they would get blisters anyhow. That the fewer bandages would give them more room to move as the wrapping would get in their way.

For some reason, we just could not get connected with the insurance and suppliers. The insurance that covers them will and does pay for all their supplies, but putting the three parts together was a frustrating challenge. But we persevered and prevailed! In the meantime we learned to stretch a bandage many ways.

Alex was released from the hospital a few days before Corey as his wounds were not as infected and serious. We had to stop at another hospital for our daughter to have some tests before we went home. I was holding this tiny scrap of humanity and noticed he had what looked like a chunk of raw liver in his mouth. Alex had formed a huge blood blister in his mouth and when it broke, it was impressive. This was our first blister and it was a good one! This was not what babies are supposed to be all about.

On the way home from the hospital the day we picked up Corey, he threw up in the car. We thought that it was car-sickness. We should have been so lucky! He had a bad case of flu with all the things that are inherent with it. It was impossible to keep him clean on either end. It is bad enough to have any baby get the flu, but one who is wrapped up like a mummy is really impossible to keep clean. No just stripping off the soiled clothes and washing the baby here. All the bandages had to be changed too. A two-hour job. Only he was not lasting even that long between bouts of nausea and diarrhea. He finally dehydrated so badly that the hospital near us could not find a vein to put the IV in. And this was made worse by the fact that every nurse they called in was frightened by his EB, they offered us a free vein screening afterwards, but I was kind of scared. Finally, in desperation, the Dr. put it in his jugular and they taped it to his neck in spite of my protests. They then transported him down to Stanford for another weeks stay.

The same week, Alex, who was almost big enough to see came down with pneumonia. And of course the technicians in the radiology lab, who I warned against handling him wrong, took all the skin off his feet and a goodly part of his upper body. I was very upset and vowed that this would never happen again as I would be a very involved and vocal, even physical, guardian angel from then on. And I have been.

This was our first week’s introduction to EB. We were impressed by our experiences and worried about the boys. As challenges go, this was a first rate one. It would take everything we could give it. And then some!

Things we observed and the evolution of how we care for them:

The boys were in extreme pain during bath time. They constantly developed new blisters during the process. Especially on areas like the heels and bottom. Picking them up, Corey with his mass of open wounds and Alex, so tiny and easily damaged, was very, very difficult when they were completely naked and that warm, wet skin seemed to be even more fragile. So, rather than completely stripping them and doing a full bath daily, we began to wash and rewrap smaller areas like the upper body, using a small tub (one or two gallons) of water with bleach (Dakin solution) and salt added. Using pieces of Kerlix as a washcloth and running the water over the wounds that didn’t fit in the tub with a turkey baster or the gauze squeezed out over them. Also, we keep a spray bottle with a gentle spray full of bleach water to spray on small areas quickly. After we wash, medicate and rewrap the area, say the arms and torso, we then go on to the next, lower body and feet, and repeat the procedure.

We noticed that whenever an area started breaking down, it continued to break down. It was fragile and very susceptible to damage. Those fibrils were broken and did not reform well. As the children got older, the skin areas that had never broken down, were stronger and not near as easily damaged as those areas previously blistered. And that when a blister was growing, it would stop dead where ever there was a bandage. So the wheels started turning. If the bandages could stop blisters from growing bigger where they would stop them, could they prevent the blisters from forming at all. Could this preventative, or prophylactic, bandaging keep that fragile and oh so tender baby skin in tact for a while and maybe the skin and fibrils, what few there were, might become stronger with aging. Thus began our journey of discovery, to find every possible way to wrap all the body successfully to protect it from the fast lane of breakdown.

The OT’s and PT’s were determined to find splints and gloves that would prevent some of the contractures from happening in their hands. We used everything we could think of to help. Plastic splints that were heat formed. Foam ones. All sorts of them. They were less than worthless and some even caused more pain and damage than they would have prevented.

We were assured that the burn glove web-spacers would prevent any more web space lost. In theory it sounded great. Reality for us was they were a no- go! They were hard to fit properly on these tiny little hands. Remember that my kids were losing web space from birth. And if they didn’t fit right and keep those web spaces very snug, they couldn’t do any good. They were stiff and the Velcro closures were bigger than the gloves! The burn garments are made from a very stiff latex. In trying to put it on fragile EB skin, it was causing a lot of shear pressure that was doing damage. A true case of the cure was worse than the illness. Any glove type product was a problem as it would do damage if it was snug enough to do a good job. I finally decided to find a way to wrap the gloves on them instead of pulling them on. So the hand wrapping technique was developed.

When ‘designing’ our wrap-on glove, we had two areas of concern or criteria that had to be met. One was that it must protect the hand and fingers from damage as much a possible and the other was that it keep the web spaces intact. We needed about a one inch bandage to wrap around those tiny fingers. The suppliers we were using assured us that no-one made a one inch roller gauze bandage. So we cut 2″ soft-cling in half to make 1″. The next year we found 1″ Conform at the hospital where Brandi was taken after her birth and changed suppliers!

The rest of our bandaging techniques just grew with the kids. We shared ideas with other parents and played with different ideas and products. We are ever-changing as the kids grow and as the blistered areas of concern move around, but all our wrapping is basically as we show you in the Wrapping the ABC Way pages. We encourage you to be creative to suit your own ideas and needs. This is just what works for us and is somewhere to start.

The kids  after five+ years of being bandaged this way are doing well. Corey still has ten fingers with very little lost web space. They are a bit crooked and are going to be straightened fall of ’99, but are still doing well, in spite of the fact that they are very fragile and the skin in tissue paper thin. I have no doubts that they would have been completely webbed in again within months had they not been wrapped. The wrapping also gives him a lot of protection for that so fragile skin and enables him to do so much with them that he could not do if they were not wrapped. He has gone from being 75% with out skin to 15%to 20%. His feet, shins, hands and elbows are almost always broken down, but the area reduces every year.

Alex maintained well with almost no breakdown, once we got him healed up, for some time  until he got the itchies. Then, the bane of EB reared it’s ugly head and he scratched himself from maybe 5% of breakdown to over 75% of his body without skin. He was a mess. A regimen of special creams (first our own concoction and then the Alwyn cream), and oral drugs (Claritin in the am and Atarax in the pm) has cleared almost all of this up, but has taken a year and has left him scarred. We had to do some very heavy wrapping to try and keep those persistent little fingers from doing constant damage. He was far more tenacious than we were. I cannot imagine what he would have looked like if he wasn’t wrapped at all. Any area he could reach was constantly blistered. But he is doing well now. His hands are exactly where they were when we started wrapping them fully at about six months, slightly crooked with a very small amount of lost web space.

And “Baby Princess Brandi” (as she calls herself) is amazing. She was a mess when we got her home from the hospital. A friend, who happened to be the attending neonatal nurse at her birth, told me that one could just stand and watch the blisters coming out all over her. This nurse was the home care nurse that came to our home when we first got the boys and gave us so much support and help, so she had an excellent handle on EB. She was able to tell the doctors right away all about Brandi. They sent her to a children’s hospital for care that knew nothing about caring for an EB child. I have never understood why she was not transferred to Stanford, just a few miles further. We did not get the final word that Brandi was ours for two weeks and could not care for her until then. As soon as we got the ok, we went to the hospital and started wrapping her. None too soon, either. As soon as her pediatrician there watched us wrap her and tell all about EB, she released her to us. Thank goodness! We had her healed up in about two weeks and has been wrapped ever since. Her feet are fragile, as they keep getting stepped on and find their way under bike tires frequently. And she got the dreaded itchies on one arm, which is hard to heal. She has had blisters on her elbows after falls and small ones on her hands as she persists in pulling off the finger wraps. (She looks like she has about fifteen fingers all the time as the wrapping stays in the shape of a finger) She takes out her knees pretty often from falling. Other than that, she has had virtually no breakdown. And is a very active child. She is even taking ballet lessons. We credit all to her being wrapped from the start.

Hand Surgeries

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…

Bandaging and Severe RDEB ~My Story~

by Silvia Corradin

My story on how I came to care for my son started, as with all RDEB babies, when he was born. Since he was c-section he came out perfect except for some problem with his mouth. The nurses sucked all his skin out of his mouth when they did the routine suctioning of the liquid in his mouth when he was born, but we did not know it at the time. It wasn’t until the next morning that the pediatrician came into my room to tell me that they had to put Nicky in NICU in an incubator because of the problem with his mouth. They thought it was either a “Staph Infection”, “Herpes” or some rare skin disorder called “Epidermolysis Bullosa”. By then, in fact, he had started blistering all over the place, not just his mouth. The Neonatologist had a dermatologist on his way from the Children’s Hospital in Phoenix where he always worked on Tuesday from his office in Tucson. When the dermatologist arrived it was around noon, he told me that he had seen Nicky and did some sort of test with the eraser from a pencil and he wrote down the name “Epidermolysis Bullosa”. He was fairly sure that is what he had but did not know what form.

Nicky, 17 months old

After he left, the nurse took me down to NICU in a wheelchair and then left me. I was stunned to see that my baby had been put in isolation. They had to put an IV on him because he could not eat since his mouth was in such a poor shape, and he was attached to a heart monitor and other things. He was in an incubator to keep him warm, had no clothes on him aside some bandages and the diaper. They were keeping the tubes attached to his tiny body with gauze. They could not use tape. The tape had already damaged his tummy, and the hospital bracelets that they had put on his ankles had done some serious damage as well. I held him for what I thought was an eternity, the blisters on his little body were horrible, and I had never seen anything like it. On the right side of his head there were a lot of little red marks where the skin had torn off. The nurse told me he got those spots when I was trying to push him out, he kept banging his head onto my bone. The heart monitor they had put onto his head when his heartbeat had fallen caused other spots on his head.

I went back to see him later on with my mom and my mother-in-law, and it was there that my husband called me in tears. Earlier he had come to see us, and I had given him the name of that strange skin disorder. Now he had had the time to research the Internet about it, and he was completely devastated. He told me that he would most likely die from this. The Neonatologist comforted us a lot, and told us that EB is something that could be lived with. Another nurse told us that he had seen a newborn with EB before that did not survive, but that was in much worse shape than Nicky and that, unlike him, this baby’s wounds never healed. We did not know what to think.

It was apparent from the very beginning that on spots where the nurses had bandaged his body he was not blistering anymore and he would not be able to rub his hands causing blisters on his hands and face if they were in mittens. Therefore I had my husband bring clothes and other things to put on him so the skin would not be so exposed. We had to learn this on our own because the Dermatologist told nobody how to properly care for our son, not even that the blisters needed to be punctured so they wouldn’t grow. Because he failed to tell us this, Nicky was in real bad shape. Both elbows were completely skinless, and so were his ankles, the top of one hand, several fingers, one of his knees, the big toe on his right foot, several spots on his legs, and his chest.

The dermatologist came back the following week, and because the blisters were not being popped Nicky was in absolute horrible shape; he talked to us for a while and managed to really depress us. Over and over again he did not want to give us any hope for his survival. He told us that we would be in week after week to treat infections, if not worse, and totally painted an extremely bleak picture for us. Afterwards he took us step by step on how to care for his wounds taking extreme care in doing so.

When we went back to see him at Phoenix Children’s Hospital a couple of weeks later, he brought in a lady, Heather, who had lost a son from Junctional Herlitz EB a few months earlier to help us and teach us proper wound care. When Heather saw our son, she immediately knew he could not possibly have HJEB, and that he was going to be OK. She showed us photos of her son and we could definitely see a difference. Heather was wonderful and told us how important wound care was; showing us exactly what she did to help her son. I never forgot it.

A month later we finally received the diagnose of RDEB and the Dermatologist emphasized how Nicky’s wounds, because they are deep, needed to be healed with moisture. A dry cell is a dead cell he explained, and could not heal back to “normal” and that is where scars come from.
In the beginning we had not bandaged all the wounds because they were not scarring and healed much faster, but as time went on it became apparent that moisture was indeed much needed, even though it slowed down the healing time considerably. One particular instance etched in my mind was when Nicky got a rather large wound on his tummy when he was 6 months old-it healed really badly because it was almost completely air dried, and it was absolutely awful. It looked so completely different than the normal skin surrounding it, it was an eye sore. Not only it looked bad, it was also much weaker than normal skin. It was only a matter of a few weeks that the complete area (and only that area, not the normal skin surrounding it) was a new wound. This time I made sure it healed with a ton of moisture and covered and protected, and although it took a while to heal, the skin looked a million times better, and, most of all, 13 years later, the wound has never re-opened!

As Nicky started crawling and moving more and more, it became very obvious that he needed more and more protection. At first it was just the hands, feet and elbows, and then his knees and more and more as time went on. It was apparent that the areas that had never gotten blisters in the first place were getting much tougher than the areas that had wounds before-those areas were much easier to get a wound on, so it was important to us to keep him as healthy and wound-free as possible. After we finally saw an EB specialist it became even more important to us to keep him bandaged because he stated that the #1 killer of RDEB children was infection, that many children are anemic due to the blood loss and, finally, the threat of cancer in non-healing areas was particularly upsetting to us, making us realize how important it really was to keep the baby as wound free as possible. One particular eye opener came a few months later. We were visiting Stanford for a routine check-up and we were able to meet a few other parents with RDEB children, and one in particular, the late and much loved Sheri Coil, decided to do an impromptu bandage “class” showing the parents how to wrap hands, armpits, torso, legs and feet. It was amazing. The things I learned that day I still use today. What was most impressive is how little damage little Brandi had on her body due to the heavy bandaging, and while at the time I thought she was “overwrapping” (a term I was referred to regarding my bandaging Nicky later on), at the same time I was amazed on how little wound mass this child had. I know some people feel that heavy bandaging means the child cannot move, but I beg to differ. It is because of the bandaging that Nicky is even able to walk and even run a little. It is because of the bandaging that Nicky is able to bump on things a little bit and be a little rougher without fear of getting hurt. It is because of the bandaging that he is not afraid of people touching him and hugging him. Sheri showed me how active her 3 RDEB children were despite the heavy bandaging and I became a believer.

At the time, however, I was not able to start the heavy bandaging because the insurance was not covering any of my son’s supplies, so I had to wash and re-use bandages because they were so expensive and we simply could not afford them. Hence I tried my best to cover what I thought were his worse spots, but with time I had to do more and more because of the level of activity my son had.
I did not start wrapping the torso, for example, until one day when Nicky was 1.5 years old. He was wearing a white t-shirt that day and I will never forget how one moment the shirt was completely dry and after I turned around, the shirt was completely soaked. At first I was shocked, not knowing how he got all wet, until I took off his shirt for the biggest eye sore ever. He had a blister, the size of my hand, which went from the front of his chest, and covered the entire side and went all the way to the back. To date, that was the biggest blister he ever had, and the last he had on his chest, because I’ve been heavily wrapping it ever since.

Another bandaging area that I had to learn how important it was is the hands. When Nicky was a baby I was told his hands could “web” but I was never told about the “contracting”, or, in laymen’s terms, the curling up and webbing of the fingers into the palm. I was pretty consistent in keeping the palm or back of the hand bandaged if he got hurt, and made sure that if he got a wound in between fingers I kept the fingers moist and apart. But it wasn’t until the visit with the EB specialist that he pointed out to me how his index finger, at barely 8 months of age, was already curling up. I could not believe it; my 8 month old baby was already disfigured. The pediatrician sent us to a hand therapist and physical/occupational therapists to see if we could get a handle of hands and prevent further damage, and while the hand therapist made some splints to wear at night, the physical/occupational therapists basically showed me the importance of straightening those fingers every single day. Another mom sent me some gloves made of Lycra that were elastic, so that the tips of his fingers could be free. Since I still felt as if bandaging each finger was overkill, I thought this was the best course of action. Well, I was wrong. The splints were so incredibly hard to put on Nicky, we quickly gave up. There were times they were doing more harm than good. While the gloves really helped in protecting the hand, they did not help in keeping the fingers apart or straight because there simply was not enough tension. Lastly, the straightening of the fingers worked, but without a way to keep the fingers apart, the fingers were becoming useless anyway because they were webbing together. By the time Nicky was 2 years old his right hand (and he is right handed) was so badly webbed he would no longer use it. The fingers were webbed together and somewhat curled and Nicky was now doing everything with his left hand, which was in a little better shape than the right one. Something had to be done, and soon. After much research, talks to various Doctor and internal debates, we decided to go ahead and do the surgery, and that we would start aggressively doing the hand bandaging immediately after surgery. While the surgery and the recovery is something I rather forget because I had never seen my baby in so much pain, on the other hand, he came out with a hand from this procedure. I have been wrapping his fingers individually and the palm/back of his hands with Vaseline gauze first, to retain the moisture, then I cover with 1′ gauze. The surgery on that hand was now about 12 years ago, and while the right hand’s fingers are a little curled up at this point, he can still use them well, and there has been no loss to web space. The hand can probably hang in there for a few years to come without any surgeries, and even so, we’ll most likely opt for a “partial” surgery, just to straighten a couple of fingers.
The left hand benefited from having aggressive bandaging early on, but it was already is fairly poor shape, and a surgery became a need when Nicky was 3 years old. Unfortunately the recovery from this surgery did not go well and the fingers were not straight afterwards, I blame myself for it, I was working full time as a single mom and was not able to tend to this hand as much as I should have. Because this was, after all, his left hand, I pretty much “let it go” and it was unbelievable how fast the fingers webbed and curled into the palm of his hand. I was still keeping them apart with gauze, but he basically had no fingers to speak of. The only good thing that came out of that surgery was that the thumb was released and he could use it well now. I was always planning to have another surgery on that hand and tried to get the right Drs involved this time, which took time, but I did not seriously and aggressively look into it until after Nicky started kindergarten and he saw the other children’s hands. To see my son devastated because his hand was different than his peers and asking me if the doctors could straighten his hand was more than I could bear.

Just before his 6th birthday I was finally able to get him in to get a hand surgery with a Dr at Stanford and, by far, this was the best experience with a hand surgery yet, he wore a cast and took a lot of pain medicine and he did quite well. While Nicky himself told me he did not like the surgery or recovery, he is so happy he has a hand! Future surgeries, if any, I will leave up to him. It’s his hands, his pain to endure.

Now that Nicky is 14 years old, he himself understands how important it is to get him wrapped, and he even asks me for MORE bandages in certain areas. If for some mistake I miss an inch of his body it would be blistered up next time I unwrap him, so he’s become extremely aware of the benefits of bandages and how much they improve his life. There are many parts of his body, such as his back, that haven’t blistered at all in years and the skin there is absolutely perfect and normal, even has some little hair growing out. His chest is also looking fairly good considering some of the problems we had early on. The hardest and most wound prone areas are his entire legs, ankle and toes, his hips, his armpits, elbows and hands. Even so, he has very little scarring elsewhere, which is a miracle of the bandaging, since I know how severe he is and how bad he would be if I was not bandaging him. The fact that he’s also not so active surely makes a big difference, but he does scratch a lot, hence some of the heavier bandaging to prevent him from hurting himself aside the anti-itch medicine he receives everyday.

To parents of severe RDEB children, don’t let anybody tell you that you are “overwrapping” your child. There is no such thing. Every child is different and needs to be protected. Perhaps some children deal with it better being underwrapped, and if it works for you, good for you. Bandaging, in my son’s case, has improved his life dramatically. He can still do everything he wants to do and more, because he feels protected, and his wounds at times only account for maybe 20-25% of his body, and mostly because some take a while to heal. New wounds are now fairly rare, and are mostly accounted for by his itching that we are trying to get under control.

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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