Drake was born on August 3,2007. Right after his birth
it was obvious there was a problem. Little Drake E.had skin missing on
the tips of all of his fingers! Shortly after a big blister appeared on
his little butt. A couple of Docs looked at Drake E. and guessed a couple
of things. One finally called a dermetologist that said he thought it
might be epidermolysis bullosa. We brought him to This doc when Drake was
4 days old. He took a skin biopsy. He said it is e.b. or a lack of
Zinc. Lets hope it is a zinc problem. Never having heard of e.b. I
thought "how bad can e.b. actually be? "I went home and looked on the
computer. I had never seen anything like it!!! It is a very rare (what are
the chances?!) painful, disfiguring disease. I looked at Drake E. I looked
at pics of these other kids.
They are called butterfly children because
their skin is as fragile as butterfly wings. It can't be!!!! I tried not
to think about this until we got the results. I went along-took care of
Drake-Chase and big sis Sydney. 24 days later we got the news. Drake had
junctional epidermolysis bullosa. I was heartbroken. I chose then not to
find out if Drake E. was herlitz or non-herlitz..Herlitz was deadly. I
was not ready to know!!
During this time Drake E.was such a beautiful
little guy. He was getting big! He loved to eat! He loved to watch his big
brother!! He would stay on my lap all day if I allowed it (I would have
but,ya know!) He was a "normal" baby. Except for a couple of bad areas on
his skin. He was doing great! We all loved him so much. He had the most
beautiful dark blue eyes-long eyelashes and curly blond hair!!!
September Happened.Drake got mrsa. Infections are normal for children
with E.B. Drake was in the hospital for 10 days. He came home a little
lighter, but that was normal after illness-right? The problem was Drake
NEVER gained weight again. He would gain a bit one week-lose a bit more
the next. He went to the hospital on september 18th. He weighed almost 11
lbs. He NEVER hit 9 lbs again.
I then agreed to get a nurse to help with dressings. That was
the best choice ever. The doc said it would cut down on visits to the
office. By this time-middle of October Drake E. was still losing
weight. The nurse they sent was the most wonderful person that could ever
have come for Drake E. By this time his skin was also not great. This is
when I had to start covering basically everything except his face,and
neck. She was such a help. We had many brainstorming days on how to cover
this area, or what we should use on that wound. If she didn't know she
would ask others (she had never seen E.B.-not a surprise!!).
she left were my good days because I knew he was well, at least for that
day! Then come december his blood was low in iron. Not unusual for E.B
for all the drainage from the wounds. His first blood transfusion was
december 18th. From then on Drake had them once a month. This would
continue for the rest of his life. This was his specia l"daddy day". Daddy
would stay with him for the day at the hospital. This way Mommy could
have her special "big kids day." The older kids loved to hang out with
Mom all by themselves that day. Daddy and Drake E.could chat by
themselves about whatever boys chat about!!!
At this time is when the doc started really talking to us about Drake
E. We had to decide if a feeding tube would be placed. It was time to find
out if Drake had herlitz or non-herlitz. It was explained to us that it
would be MORE pain and suffering for the same outcome (death) if he was
herlitz..We went and had another biopsy done. His dermetolegist gave us
his educated guess. He believed Drake E.was herlitz. By this time Drake E.
had a big wound on the back of his head that would not heal. He said
this is a sign of herlitz. I went home and tried, again not to sit on pins
and needles until the results came back.
This time-I didn't do so
well.It was a very hard 2 weeks. The doc called and my fears were
confirmed.Drake E.was herlitz. I got off the phone and broke down. I had
stayed so strong through it all until this.
I had never ever thought I would ever have to
choose between letting my baby die, or trying to prolong his life for
maybe a bit more with a surgery. It is a choice no parent should have to
make. After Many talks and tears we decided to let Drake E. go-without
any added pain. The doc told us he could live for 3 days or 30 days. Hard
to tell. He explained how his little body would begin to shut down. We
would go to the hospital-so they could give him pain meds. And he would
go peacefully. I signed the DNR papers and left the office. All I could do
was love that baby as much as I could. I wanted him to know I loved him
more than ANYTHING!
At this time-right after christmas he had red
cheeks-he had rubbed them with an iv board. Daddy named them his
Christmas cheeks!! He was so cute with his red cheeks!!! Chase still
talked about "when Drake E. (Grake E. as it sounded) gets bigger we will do
this or that" He had soo many plans!!!!! At the age of barely four how do
you tell him his brother will not get bigger - his brother will not be
around to ride diago (Chases tricycle) ect? How do I tell him this? I
started looking at pics of eb babies that had passed, and explained how
some babies are to sick from eb and are angels now. He actually started
to understand that. He still would not relate it to HIS baby bro - for he
had already made MANY plans for him!!! He did say a couple of times, but
Drake will not be an angel. I would tell him maybe someday, but he looks
pretty good today!
E. still loved it best on mommies lap. I do mean all day everyday if I
let him!!!!! He would sit in his swing - I had to drop him and run!!!! If he
saw me he would wrinkle that little face up and give me his heavy
breathing, and a couple of little squeeks would be involved. At this time
his Grandma Ann and Uncle Dave came to visit from Michigan. Drake E.
actually sat on her lap and just looked at her - I was even in the room
and no wrinkling or squeeking for Mom!!! Of course they did think he was
At this time if mommy had to go anywhere it was
Gramy that would come over. They were like peanut butter and jelly! He
loved his gramy.
He was always smiling on the inside with her (or so she
thought!). He was so funny with her. He would be all cuddled on her
lap (any lap would make do till mommy got home!), sometimes sleeping. The
second he would hear my voice or see me, he would have to tell me how bad
it was!!!! He would go into full drama mode! The wrinkling - the squeeking
moving his arm about. He would make me notice! He would tell me how awful
it was! This little guy could always tell you just what he was
thinking. He demanded to be noticed! He never spoke a word or smiled in
his 13 months-but with his eyes-he could tell you everything. He was an
"old soul" in a little body. A nurse at the hospital pointed this out to
me. He always looked as if he knew EVERYTHING. There was no curious
looks. He just knew everything. He didn't need to speak.
many months Drake E. did very well for what his prognosis was. He didn't
have any major infections, no airway problems, ect. Finally in july we
decided if Drake E. was going to fight so hard. We would help him. He
still only weighed around 8 lbs (give or take on any given week). This
means he had not developed at all developmentally. He was like having a
six week old. We met a great dermetologist in N.Y.C. She set us up with a
surgeon to place a feeding tube. He went throught the surgery great and
came home after only a few days. For about 2 weeks the tube was
wonderful. Then it started leaking.
We took Drake back to N.Y.C and this
surgean told us to take Drake home to die. We did take him home. We took
him to a wound care specialist we had met along the way. He let us know
the wrong tube had been placed. He was not allowed to place the new
one-for lawsuit purposes. To make a long story shorter. We took him to the
er in our town and found someone that would put in the right one. It
worked!!!! No leaking! By now Drake E.had lost more weight and was down to
7 lbs, even. He started to gain. He looked better. In just a few weeks he
was up to 7lbs,10 ounces!
On september 24th me and the boys had a great day. It was warm out, so we
went for a walk. Drake and Chase raced - Chase on his bike, Drake in his
stroller. Chase had fun and we pretended Drake did too!!!! Everything was
very normal that night. Drake seemed well. He was eating baby cereal and
loving it! I took his temp right before bed because his cheeks were a
little red. Wanted to make sure it was not an infection. I cuddled and
talked to him for a long time before bed. I took 18 pics that day. Mothers
intuition??????? On september 25th I woke up and the first thing I
thought of was - I could not hear Drake breathing. I knew he was gone. I
don't remember much else from that day. The docs think his heart stopped
from just being so little, so long. Doesn't really matter to me.
horrible disease my baby had to suffer with took him. I know he is better
now. He has no pain, no bandages, no tube going in to feed him. He is
better. It is us, the people who loved him that are not.