I
would like to thank you for the opportunity of sharing my
family's experience with food borne pathogens with you.
It's a lesson in life that I hope no other family has to
experience. Our tragedy stemmed from an in tact parcel
of beef that was tainted with E.coli 0157:H7.
Some
time in June I purchased a large amount of meat from the
butcher. I even had them grind the leanest meat they
had and form hamburger patties for me. My family and
I ate this meat over the course of a month. It wasn't
until we returned home from our family vacation at the shore
that we all started to show signs of being sick. The
twins (20 month old Samantha & Nicolaus) had it worst
with the diarrhea, although Jonathan (my five year old at
the time), my wife, and I also had signs, but not as severe.
We contacted the pediatrician multiple times during the
last week of July in 2000. We were told that there
was a virus going around and to just make sure they (the
twins) don't get dehydrated.
A
couple of days later on July 29th, 2000, Nicolaus
couldn't hold anything down and we ended up at the hospital.
Every few minutes he would have diarrhea and vomit, and
he was in excruciating pain. He screamed non non-stop.
My wife and I were extremely scared and it wasn't too long
before they came up with the idea that he might have E.coli
0157:H7 induced HUS (hemolytic uremic syndrome). Unfortunately
for us, he did. From July 29th until the
wee hours of August 1st he continually worsened.
When
we changed his diaper it was as if his body was trying to
rid itself of everything inside. It was extremely
upsetting to see and difficult to explain. I guess
the best way to describe it is that it looked as if his
intestines were coming out of his body. Nicky, was
constantly screaming in pain and asking for his ba ba, over
and over, hour after hour. We weren't allowed to give
him anything because his kidneys had shut down earlier in
the day (July 29th). We held him, and consoled
him while he screamed. We would pick him up and hug
him. Then he would want to be put back in his crib.
Then he wanted to be held again. This cycle continued
over and over, all the while he would be crying and screaming.
I soon found myself contacting friends trying to find a
specialist that could help my little boy. I came up
empty handed because he had a pathogen for which there was
no cure. We were continually told that it had to run
its course and that it was going to get much worse before
it would get better. They were candid with us and
also mentioned that he might not survive.
By
this time Nicky's room was quarantined off to all people
except for my wife and I and the nurses that tried to keep
us sane while watching this horrific site hour after hour
(you may want to say why was it quarantined). My wife
and I took turns around the clock with Nicolaus until early
afternoon (I think it was July 30th) when my
wife called me and said that I needed to get to the hospital
ASAP because she didn't think Nicky was going to make it.
When I got to the hospital I consoled my wife and tried
to get her to understand that we're doing everything we
could. I probably wasn't too convincing since it's
hard to understand how there can be something that can be
so debilitating, so fast. It was only a couple of
days earlier that all three of my children were out playing
in the front yard. Now Nicky was struggling for his
life. I didn't understand it then, and I don't understand
it now.
Again,
Nicky was in constant pain the last two and half days of
his life. They were filled with non- stop screaming
and hysterics. On July 31st, we had a family friend
that had helped us with the twins when they were born, come
and help us out in the hospital. She had just recently
gone through E.coli 0157:H7 with her own granddaughter.
Late in the day she arrived and at that time we felt comfort.
Nicky actually fell asleep. The hospital told us it
was a good sign and that we should both go home and come
back first thing in the morning. My wife left first
and then I went home a while later. We lived about
a half hours drive from the hospital. Before I got
home, I received a call from my wife and she said that the
hospital had requested us to come back in. She said
they were going to put Nicky on Dialysis. They said
everything was okay but we needed to come in.
My
heart instantly sank. When I reached home, I picked
up my wife, and we raced back to the hospital. When
we arrived, there was an eerie feeling. When we got
the intensive care unit, we were met by a couple of guards.
They wouldn't let us in. Our friend came out and told
us that Nicky had passed away (stopped breathing), and that
they had brought him back to life, and that he was on life
support. They were preparing us to go in to see our
son. They told us that he was extremely cold, they
were warming up his body, and that we shouldn't be concerned
about his temperature. They also said that he was
bleeding somewhere bad and that they had to figure out where.
So
we were finally allowed to see him. We tried to console
him. We told him that we loved him. We rubbed
his forehead and grabbed his hands putting our fingers in
his palm. We moved our fingers through his hair, anything
to try and get him to respond. It wasn't soon before they
kicked us out so they could take him out for some test (x-rays
or something to see where he was bleeding). We were
lead back to a room where we hugged each other, cried, prayed,
and cried some more.
Eventually
the doctors came back in the room. We were overwhelmed.
There were about a half dozen of them. There we sat,
listening to them tell us that our little boy had had several
strokes in every part of his brain. They told us that
there was no chance for survival. He was gone, and
they needed our permission to take him off life support.
If we wouldn't make the decision, they said the hospital
would meet and a decision would be made for us or something
like that. They were extremely polite and they answered
our questions. They then left us alone to make out
decision. We didn't know what to do, but we thought
the best decision was to leave it in the hands of God.
So he was taken off life support and soon after, our beautiful
little boy was gone along with a part of us.
I
can't begin to explain the pain that goes along with this.
Although I can tell you how our other children handled it.
The next several days our house was filled with friends
helping us cope with this. At the same time, Samantha
(Nicky's twin) was running around the house trying to find
her life long playmate. She would ask for Nicky and
we had to explain that Nicky had left us to be with God.
We sat Jonathan down and explained to him that Nicky was
very sick and that God thought it was better for him to
go to heaven and that his little brother was now an Angel.
That wasn't the end of the questions, but the answers were
always the same. Nicky was very sick and he left us
to be with God.
A
few weeks after we laid Nicky to rest, our oldest son Jonathan
came down with and needed an emergency appendectomy.
We soon found ourselves in the same hospital, same doctors,
and same floor all over again. After attending a medical
conference in Seattle later in the fall of 2000, I found
out that E.coli can also cause this as well. Although
Jonathan fully recovered, we still find ourselves wondering
if there is something else that this deadly pathogen can
will cause. I'd like to say that we've pulled through
this, but each day is still a huge a struggle.
I
still look back at it like it was a dream. I still
find myself looking around trying to find out where Nicolaus
is. I still picture my children Jonathan, Samantha,
and Nicolaus outside playing. I still see them down
at the shore playing in the sand. Only now when the
only time we see Nicky is when we visit the cemetery.
You
people have the envious opportunity to make recommendations
on food borne pathogens. You have the ability to make
a difference. My family and I, and especially Nicky,
hope that your recommendations save another family the heart
ache that we have to continue to endure. If there's
one point that I'd like to get across it's that E.coli 0157:H7
is not a natural part of beef. We as Americans love
our beef. When we go to restaurants, grocery stores,
or butcher shops, we order our steaks. I've never
heard anyone in a restaurant ask for fece's, medium rare.
We need improved testing to stop this contamination.
Americans have been erroneously lead to believe that our
beef is safe when in fact it currently is not. Thank
you for your time, and again I am truly jealous that you
have the opportunity to make a difference. Please
don't let it slip away.
June
2000, Nicky was in the back yard with his brother helping
Grandpa move dirt. The loss of Nicky was taken hard
by his Grandpa who also passed away shortly after Nicky.
July
4th, 2000 at Lavallette, New Jersey The Beach
House
July
4th, 2000 at Lavallette, New Jersey The Beach
