||First, I would like to thank all of you for
sharing pictures and/or personal stories of your journeys with
your special child.
My husband and I have been married for almost 15 years. On
July 23, 1997, we welcomed our first son, Joshua Martin. He was
a beautiful baby boy, almost 9 pounds. My labor was long and
difficult, and unfortunately, Joshua suffered brain damage. He
spent 45 days in NICU, and when he finally came home, we started
to realize that he was going to be a very special little guy. He
had a short and painful life, full with therapy and routine
visits to his pediatrician and to the local emergency room.
My husband was going to school at the time and I worked at
a bank. Joshua had his own caretaker and went to day care and
eventually school. His last year was his very best, he was now
five and was attending school and day care, he had so many
friends. Sadly, he died peacefully at home on November 28, 1992.
We lived in Puyallup a small town south of Seattle. I quit my
job and my husband transferred to the University of Arizona to
complete his Mechanical Engineering degree. I do not remember
much of the years that followed, I was deeply depressed, and I
did not know what I could do with my life to fill the hole that
the loss of my son had created.
|The summer of 1996, I started school
at a local community college, I had decided that I wanted to
become a Nurse. Often, my husband tried to talk about having
another child but I refused to even think about it. I was aware
that children can be injured at birth, but they can also have
many problems and I would not be able to handle another tragedy.
I heard from so many people that the chances of us having
another child with problem were minimal. We decided to go to
Spain (that is where my whole family lives) to start the new
millenium and when we came back to Tucson, we realized that we
were having a baby. I had the best Obstetrician in town and to
ease my fears, she agreed to deliver the baby by cesarean. We
had routine sonograms, and we were told that the baby had a
"huge" forehead but she was fine.
|On August 29 my 36 weeks gestation,
my blood pressure was dangerously high, so my doctor decided to
deliver the baby that day. The surgery went well and I finally
saw Marina. My first thought was that perhaps the medication
that I was given to prevent seizures (a possible outcome of the
high blood pressure) was making me see things. My doctor told me
that she was a beautiful baby but she had some anomalies on her
hands. She was rushed to NICU because she was in respiratory
distress; nobody said a word to me until I was moved to the
recovery room. The neonatologist came and told me that Marina
had Apert's syndrome. He also gave my husband and I, a photocopy
with a brief description and a couple of pictures. I know that
only you can imagine and know what we were feeling. She spent 6
days at the hospital while we commuted back and forth to hold
her and feed her. My husband found Teeter's page and some
information about Apert's.
||Marina is now almost 6 months old, she had had
one surgery on her hands to begin to separate the thumbs and the
little fingers because the nail was growing into the nearby
tissue and it was causing an infection. On the 21st of this
month, she had another surgery to continue the reconstruction of
the right thumb. She did extremely well, we have not seen the
results yet, but we will post pictures as soon as possible. At
this point, her doctor does not know what he will be able to do
with the middle fingers.
The first craniofacial surgery is tentatively schedule for
May of this year. She is doing well; our main concern right now
is her eating. She eats enough but does not gain as much weight
as she should. I am desperately anxious to get the surgeries
over with, but very frightened.
This page was updated September 29,2007