|Here's my try at telling Jackie's story....I hope she likes it.|
We are the Wittenburgs of Mesa, Arizona: Mark, Kathy, Jennifer, JR and
Jackie Lynn. This is Jackie's story.
At 17 weeks gestation we learned that our little baby girl to be had
"skull abnormalities and mitten hands". (The proper diagnosis
of Apert's Syndrome was not official until Jackie's actual birth on September
22, 1995.) We were devastated at hearing this news; I think more accurately
we were scared. So many questions, fears, worries; so much (useless) guilt
and anxiety!!!! Hmm That seems like a million years ago now.
When Jackie Lynn finally arrived she could not breathe at all due to
total blockage in her nasal airway. I think it was called total coronal
atresia. She had to be airlifted to Phoenix Children's Hospital to have
stents installed in her nose to create an airway. All of this was frightening
to us, but she enjoyed the helicopter ride. The surgery went well but she
started having (apnea) "seizures". She would just stop breathing;
time and time again. This was the most horrifying experience. Finally the
doctors gave her Phenobarbital and the seizures stopped. Several days later
Jackie went home with two very nervous parents armed with lessons in CPR
and an apnea monitor. She stayed on the Phenobarbital for one year, and has
never had another apnea event.
At about one year old it was time for Jackie's forehead advancement;
performed beautifully by Dr. Stephen Beals. I am eternally grateful for
his concern and reassurance. Recovery was difficult for the entire family
because we all felt SOOO helpless!!! Jackie's head swelled like a pumpkin;
she couldn't even open her eyes!! But, Jackie takes these things in stride.
Since then Jackie's surgical history consists of: tubes placed in both
ears, laser surgery to widen the airway in her nose, separation of two
fingers, eye surgery to loosen muscles that made her look cross-eyed.
She handles recovery with much more grace than any of us.
Developmentally I think she is a little behind in speech, but not in
spunk!! We supplement her speech with sign language. Of course, due to
the fact that her fingers do not bend we modify the signs, but she does
very well. She has therapy two times a week in PT, OT, and Speech. She
Developmental/Growth Milestones happened something like this: first
smile, real crawling, sitting up w/help by six months first tooth, says
dadda, stands holding furniture signs "more" by one year says
thank you, hi, up, signs music, food, eat, milk, six molars, and six front
teeth are in, and sings three songs by 20 months
Jackie's brother and sister (JR and Jennifer) adore her. They cannot
resist patting her on the head whenever they pass her. From the beginning
we have tried to explain everything we have learned about Apert to them
and they have been great. Jackie has visited both of their classes at school
and all the children got to see her scar; a big event to first and second
graders!!! She loved all the attention!!!!!
I am convinced we are the parents of the sweetest little girl on earth.
Some times it is a hard road, and I worry about the future, but I couldn't
imagine life without her now. We have met people we never would have met
before. Our whole family has a perspective we never had before. We truly
Thanks Don, go ahead and edit anything you may feel necessary. Thanks
for letting us be a part of this great network, Kathy