Shae-Lynne was born on May 16, 2000. She was a beautiful 7lb
little girl. Almost immediately we knew something was not
right as she would not eat and never woke crying for food.
We struggled with force feeding, failure to thrive and
excessive vomiting while her doctors performed hundreds of
tests trying to find the cause. She was admitted to hospital
after hospital, over and over and over again for weeks at a
time, in the attempt to get some answers.
Feeding time alone was almost more than I could bare. Every
three hours I would spend an hour and a half just to get one
ounce (two if I was lucky) into her. She cried, arched her
back, fell asleep, wouldn't suck, wouldn't swallow, wouldn't
even open her mouth most times. Unless you have been there,
I am sure you cannot imagine how hard it is to feed a baby
who simply will not eat, most people have never even heard
of such a thing. It is exhausting and heartbreaking to say
the very least and I think the hardest part is being blamed.
Of course the child will eat, that's what babies do, so
better blame mom.
When she was three months old a nasogastric feeding tube was
inserted in the hope of putting some weight on her and the
vomiting persisted. It was shortly after this, that she was
diagnosed with Gastro Esophageal Reflux Disease or GERD and
slow gastric emptying. Upon doing an endoscopy it was
discovered that she had inflammation from her little throat
all the way to her bowels. This was while she was on Zantac,
a drug that is supposed to block the acid that is being
produced by the stomach, thereby stopping the irritation in
the esophagus.
When she was about five months old she hit what I thought
was her peak in terms of vomiting, and she still wasn't
gaining weight so they inserted a nasojejunal tube for
feeding. This goes directly into the second part of the
small bowel (jejunum) so there is never food in the stomach.
Makes sense, no food, no reflux, right? Wrong....her
vomiting continues.
At the time of this writing (Feb 2001) she is vomiting an
average of ten times per day even with no food in her
stomach. How can that be you may ask? That is the million
dollar question. I am told there is nothing left to do but
wait and hope she outgrows it. How can I sit back waiting
and watching my beautiful little baby suffer? Her vomiting
has caused her to stop breathing numerous times, she has
aspirated, she screams almost every time and she has even
thrown up her feeding tube. It is the most violent gagging,
retching, and choking I have ever seen and each time it
lasts about five straight minutes. It is terrifying and
painful for her and heartbreaking for us to
watch.
At almost nine months old she is about 13lbs and still
failure to thrive. I wish I had words enough to express what
this has been like for Shae-Lynne as well as her father and
myself these past months. Unless you have watched your child
starve themselves, scream, whine and whimper in pain most of
the day, vomit like I have described everyday, month after
month, and be labeled failure to thrive, you could not
possibly understand. I only want to take away her pain. I
feel so desperate to help and yet don't know how. |