I developed PROM (felt like I was
wetting myself) at 36 weeks. I was never
told, I had anything that would of
caused this. The nurse made me feel as
if this was my fault (that he was
small), because I had smoked a couple
cigarettes a day. The whole experience
was very, very difficult. The worry,
the love that I had for my litte son.
No one really gave me any information as
to the treatment in the NICA. When I
was looking at his chart one day, this
nurse said to me,"Excuse Me, can I help
you?
" I said, I'm just looking at my
son's chart. Being 20 years old, I was
very intimadated & completely upset by
the whole experience. But, my son
"David" was beautiful. He continued
grow & do well. He was smaller then
other babies his age.
After this experience I made sure that
he had the best medical care & the best
Pediatrians. As he grow he had different
symptoms like, Still had very thin skin
on his chest & abdomen as he got older
(peds drs, all said, some people are
born that way, "No BIG DEAL"), flat
feet, intoeing (slight turning in at
hips) pain in hip, muscle cramps,
bruising, slow healing, moderate scaring
(elbows, knees, forehead), swallowing
problem (with weight loss) completely
torn ACL ligament (at 10 1/2).
All the doctors that he ever went to
said he was fine. When he was 13 1/2,
he developed a perforation of the
sigmoid colon. His surgeon's called in
a social worker to investage "CHILD
ABUSE", because they thought someone
had stuck a sharp object up his rectum
to perforate the bowel. After, getting
over the shock of what they thought, We
talked with the SW, I told her that No
one hurt my son in this way,so they
better look in another direction. She
concluded that there was "NO" evidence
of abuse. But, the more I asked these
surgeons,"What could of caused this,
What could it be? " I recieved this
responds,"Why worry he's put back
together". Can you imagine???? I tried
to find the reason, my peds dr. didn't
give a diagnosis, neither did the
surgeons. I even took him to another
surgeon, all he told me was because of
the family history of Diverticulitis, it
probaly was a congential divticulm.
This is "ALL" I recieved from him.
Not one of these 5 doctors ever
recommended a Genetics Doctor. So, they
scheduled to reverse the colostomy,
after 4 months. During the recovery the
incision stated leaking bowel movement.
I asked the surgeon, "If it's leaking
on the outside, isn't it leaking on the
inside?" He told me "NO".
Well, the bowel had leak inside my son
for a bout 4 days. He had sepsis all
through his body. When I got him to the
Childrens Hospital, he had impressive
hemopertoneum, anterior of the sigmoid
had opened entirely, hematoma on the
liver, free air, fluid, clotted blood,
abscessess, 4 perforation of the small
bowel. After trying to swallow "ALL"
of this, they tell me from looking at
the tissue from the bowel & having a
Geneticist, just "LOOK & EXAMINE" my
son. That he had Ehlers-Danlos Syndrome
Type IV (a connective tissue disorder)
which "NONE" of these doctors every
diagnosed. Because of "Not" putting
together "ALL" the symptoms throught
out his life, my beautful,innocent 14
year old son, died a horrible,
devastating death. It was diagnosed
sooner, my son would still be alive.
PROM - is common to accure in mothers
who have EDS, but it's more prone to
accure in infants that have EDS, because
it's the fetuses cells that make up the
placenta. A connective tissue disorder
should be another important thing to
rule out, when there is PROM.
My life has been devastate, my heart &
soul went into my son from the time he
was born. "HOW CAN SOMETHING LIKE THIS
HAPPEN". Because he was premature, all
of his life, I worried, I took extra
special care of him, I tried to make
sure nothing harmed him, my worst fear
was that something would happen to him,
which made me over-protective. I have
faced my "GREATEST FEAR" the death of
my son. Please educate yourself on
Ehlers-Danlos Syndrome (Connective
tissue disorder) if you have any of
these symptoms.
Thank you
|
|
