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Bandaging and severe RDEB
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 wasnt 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.
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
wouldnt 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 Nickys 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. At the
time, however, I was not able to start the heavy bandaging because the
insurance was not covering any of my sons 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. 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 laymens 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
wasnt 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 (now its 2 because his fingers are bigger). The
surgery on that hand was now about 4.5 years ago, and while the right
hands 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, well
most likely opt for a partial surgery, just to straighten a couple of
fingers. 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. Its his hands, his pain to endure. Now that Nicky is 7
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 hes 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 havent 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 hes 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 dont 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 sons 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. Click Here to meet Nicky and learn more about him and his life with EB
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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.
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 5
years later. 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 it (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.
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 childrens 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.
