| Martha Deanna
Palacio was born on Friday, January 12, 1996, at 12:01AM, at Cedars-Sinai
Medical Center in Los Angeles, California. She weighed 9 lbs 12.5oz. I,
Laura Pulido), started labor on Wednesday, January 10, 1996 late at night.
When we got to the hospital my contractions had started. The nurse offered
anesthesia and told me that the contractions would be a lot more painful
if I decided not to have anesthesia. They gave me an epidural. I was on
the epidural for 24 hours before the doctor on-call decided to deliver
Martha by C-Section. She never dropped. I was dilated, but the residents
could not feel the baby's head.
When she was delivered the doctors took her to the side to "suction"
her. Since this was my first baby I thought nothing of it. I did not question
why the doctors were not showing me the baby. When they were through sucking
all the gunk out of her airways, they wrapped her up in a blanket and put
a knit cap on her head, just above her nose . They then showed me my baby.
I saw this fair, flat nosed baby and thought to myself "she must be
swollen from the long labor". She was taken to the NICU. I was told
she had to be taken because it took them so long to make her breathe. I
didn't find out about Martha's syndrome until the day after. The doctors
had disguised her by wrapping her up in the blanket and putting the knit
cap just-above her eyes. José, my husband, had been hand-gestured
not to say anything.
 The hospital
genetics doctor and a social worker came to my room to explain to us that
Martha was born with Apert Syndrome and what they knew about Aperts. In
summary, the doctor said that Martha's syndrome affected her bones, that
she would require surgeries throughout her life and he gave us an article
on Apert Syndrome. The doctor explained that Martha's was a fresh mutation,
since nobody else in either side of the family had this syndrome. The social
worker gave us a list of resources and told us we could opt to give the
baby up for adoption. I remember all this as if it was a dream. I really
wasn't in touch with reality. I kept thinking everything was a dream and
that I would wake up and none of it would have happened.
Martha was kept in the NICU for a week. During this week they ran all
kinds of tests on her. A Neurologist came to talk to us and told us that
Martha's brain was not normal. That they had taken a scan and that her
brain did not have all the "lines" that a normal brain should
have. She said that Martha would be "slow". Another doctor came
to us and said that a yellowish-white fluid was coming out of Martha's
nose and that it might be CSF (cerebral spine fluid) leaking out. We were
freaking out. It wasn't CSF. I was feeling all kinds of different emotions.
Happy because I was a mom for the first time, sad because my baby was born
with a syndrome, angry at God for allowing my baby to have been born like
she was, an on and on. Some of our relatives were saying to us, "We
know what you're going through". This made us angrier. How could anyone
know unless you've been there?
It is now a year and a half later. So far she has had three hand surgeries
at Valley Presbyterian, David Auerbach, M.D. Both hands were operated on
each time. The first surgery (on 6/6/96) was to separate the fingertips,
which were fused. Unfortunately, during this operation she lost both middle
fingers (the tips were removed and eventually the entire finger was taken
out). The doctor said the bone was very weak and could not survive as a
finger.
The second surgery was to separate the pinky and the thumb. Skin grafts
were taken from the left and right groin. This one was done on 9/4/96.
She had both arms in casts. The casts came off on 9/26/96.
Her third hand surgery was on 2/5/97. The bone removed from her middle
fingers was used to straighten out her thumbs which were crooked.
 Dr. Hryar Shahinian
(he came to Cedars-Sinai from New York in August, 1996) did her first head
surgery (cranial vault remodeling) on Monday, 9/30/96. Hrayr Shahinian,
MD, is the Director of the new Skull Base Program. He has operated on many
kids with Aperts and Crouzons. He's is a WONDERFUL doctor!
She has not been referred to a craniofacial team. When I spoke to the
pediatrician and insurance group and explained to them what I had read
about Aperts, and that Martha would need to be followed by a team of doctors,
they gave me a list of doctors who contract with their HMO. They are not
a group nor do they work as a craniofacial team. I'm taking everything
one-day-at-a-time. She goes to her pediatrician (who also has never seen
another baby with Aperts) about every other month for physical check ups.
Martha is like the other Aperts babies I've read about, very sweet and
lovable. And, so far she appears to be very intelligent. She's been evaluated
by a Regional Center and was rated to be normal, mentally. She'll be re-evaluated
in a few months.
I wish people wouldn't stare. I expect them to look but how can we make
them understand that, as with anybody else, it isn't polite to stare. Depending
on my mood (and hormone level, I guess), sometimes I smile at the gawkers,
sometimes I give them "dirty looks" and at other times I tell
them off.
Martha has an older sister (Patricia, 11 yrs) and a baby brother (Eddie,
6 months). José (dad, 39), and Patricia are great help and support.
Martha just recently started walking (at about 19 months). She is having
a ball and is very independent when she's trying to find her way around.
I've locked all the drawers in the kitchen because she was going in them
and taking out the pots and pans and spreading them on the floor.
Laura Pulido, September, 1997
|
The Many Faces of Martha and Family |
 |
After first hand surgery - separated fingertips
|
|
|
 |
Martha's first birthday - 1/12/97
|
 |
Martha's birthday cake, 1/12/97
|
 |
Martha with Tricia and Eddie, 3/31/97
|
 |
 |
|
8/10/97
|
 |
 |
 |
|
