| Before Camila was born the doctors told us that
there was something wrong with her face (separation of the eyes and
big unusual forehead). They also told us that there was something
wrong with her feet and hands. They were certain that she suffered
some kind of syndrome but did not know which since all tests came
out ok. They said that we would have to wait until she was born to
properly identify the syndrome. When she was born she was rushed to
the NICU because she wasn't able to breathe on her own. The next
day, a geneticist told us that she had Apert syndrome. We started
looking in the web for information about this syndrome that we have
never heard. After 10 days in the NICU, we finally got our baby.
the next week she had her first "apnea" attack or cyanotic episode.
Thank God she was on our hands when this happened and we saved her
life with CPR and took her to the hospital.
When she got out of the hospital the doctors sent her home with
oxygen and a Pulse oximiter. This machine have saved her life like
5-6 times. One of those times the alarm went off about 5:00am we
were dead sleep. The alarm had gone off on several occasions and it
was a false alarm but not this time. Camila was turning blue and the
purple. We gave her mouth to mouth before we could get the ambu-vac
to help her breath. Before we could take her to the hospital she had
these seizures like 4 times in less than 45 mins. We had called an
ambulance but cancelled it because we have had these before and
could control it. But this time it was out of control. We rushed to
the hospital without waiting for the ambulance that we had called
again.
From this hospitalization Camila had a second blood transfusion
and came out with a tracheotomy. We still have the pulse ox on her
24/7 and we cannot live nor sleep without it.
As of today, August 9th, 2006, we're at the Ronald McDonald House
of Dallas waiting for the evaluations and her first craniofacial
operation with Dr. Salyer whom we've heard is the best in the field.
She was diagnosed with hydrocephalus when she was 4 months and
got a ventriculostomy 3. (This is like a bypass between the brain
ventricles to avoid putting a shunt)
This have been a long, painful and difficult story told in a
glance. We still on the fight and won't give up on her since she
hasn't given up her's. This is our only child and is the light of
our eyes.
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