Martha's Page



Martha, age 5.


First Grade School Photo

Laura (Mom), José (Dad), Patricia (11 years old), Martha (1½ years old), and Eddie (4 months). Taken July 27, 1997.
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


 

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