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Faces of Chiari - Matthew
(
Matthew and Madison at 18 months)
Matthew was about 12
months old when he started exhibiting symptoms of the condition. At first
the symptoms seemed to come on slowly and so there was never a thought
that what he would go through in the next 12 months would lead us to
discovering a life threatening condition. Matthew has a twin sister so
they tended to be at the same stages of development. At 12 months, Matthew
was walking steadily and of course attempting to even run but I noticed
that as the days went by Matthew was having balance problems, he seemed
clumsy. Running became more of a challenge where he would only take a few
steps and then fall. Another symptom Matthew had was apparent problems
drinking and eating. His throat would make a gurgling sound when drinking
and he would often vomit soon after drinking or eating anything. He became
more irritable and would beat his head against his bedroom wall at night.
He started running fever constantly and was seen by his pediatrician.
The diagnosis for
the fever and vomiting was always a cold or pneumonia. Matthew continued
to get worse in every symptom and was losing weight drastically. I even
switched pediatricians thinking this might be the reason we got no where
but to no avail. After almost a year of frustration in watching my son's
health deteriorate before my eyes, I went to the ER at a children's
hospital in San Antonio and told them to find us a room, we are staying
until someone tells me what is wrong with my son.
After 4 weeks of
every type of test and screening known to man they finally did a swallow
study and found that Matthew's epiglottis was not working properly
therefore any food or drink he would ingest was going into his lungs, not
his stomach. They immediately knew then that something was seriously
wrong. They suspected a tumor but would not know for sure until after they
performed an MRI.
 I
was actually taking a break from the hospital when I got the call from one
of the doctors assigned to Matthew's case. She told me to pull the car
over and listen. Matthew had a serious condition that was affecting his
neurological system and surgery was our only option. This was the worst
condition of Chiari that the neurosurgeon had witnessed as his cerebellar
tonsils extended to vertebrae #5.
Matthew was
immediately taken off of oral feeding and we started administering his
meals by TPN. We brought him home and I stayed home with him until his
surgery in late January 2004. Matthew had decompression surgery and was in
a drug induced coma in the PICU at Santa Rosa Children's Hospital in San
Antonio for 6 days. We were told that there was little chance that he
would ever eat orally again due to the severity of the Chiari and the
nerve damage.
On the 7th day, they
woke him up and allowed me to feed him pudding. He ate just like a healthy
2 year old would normally, finishing every drop of his chocolate pudding
with no issues! At that moment I knew that we had been doubly blessed, for
he came through surgery well and what a wonderful surprise for him to be
able to eat again!
Today, Matthew is a very active, healthy
7 year old but almost 5 years ago his future looked very grim. Although he
is not able to participate in contact sports or anything that would put
him in danger of head or neck injuries, Matthew leads a pretty typical
life for a boy his age.
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