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The Story of.....
In August of 2004 I found out that I was 5 weeks pregnant. My doctor
wanted to send me to a perinatologist to assist in my care during my pregnancy because of my diabetes. When I was 11 weeks
along I drove out to Pensacola for my first visit with the peri. After the ultrasound the doctor came in and told us that
he was seeing an encephalocele on the baby. He explained to us that this was a Neural Tube Defect and meant that the skull
had not closed and part of the baby's brain was growing outside of the skull. He said that he wanted to bring me back in 2
weeks for another ultrasound to see if there would be any changes. He said that if there weren't any changes we would have
some very difficult decisions to make because this baby would not be compatible with life and he walked out of the room. Two
weeks went by and we returned to the office and we were seen by a different doctor. After the ultrasound he took my hand and
said "I'm so sorry, but we've confirned the diagnosis." They took us into a consultation room where they offered me
my "choices". I could termnate or continue but if I chose to continue I needed to realize that if the baby made it to
term and through the birth it would not live long after. It wasn't a choice for me, the only option was to continue
and give God a chance to do His will. We didn't buy anything for the baby realizing that we would never bring her home with
us. I was determined to enjoy whatever time God gave us with this baby. The months were long and difficult.
We went to MANY appointments and watched as the baby grew and became more and more active.
The day after Thanksgiving we found out that we were having a girl. I knew then that her name HAD to be Faith because that
was the ONLY thing getting me through the pregnancy. At 8 months we met a pediatric neurosurgeon who told us that she had
treated many babies with encephaloceles and not to give up hope. Treatment was possible but would depend on Faith and the
severity of her condition. We did decided that a c-section would be best and set the date for April 1st. We had not bought
anything for the baby and were told that that was a wise decision because we could not know what would happen. As my father
said, we enjoyed playing with her in the womb because we didn't think we'd get any other time with her. They told us all of
the things that could be wrong with her such as deafness, blindness, paralysis, heart trouble, deformed limbs or organs, chromosonal
problems, or even a state of vegitation. It was all in God's hands and we were trusting Him. A date for the c-section
was set and we waited for April 1st.
After a very long and difficult pregnancy, Faith was born by c-section in the middle
of a stormy April Fool's day. She came out breathing on her own and doing better than anyone imagined. She had brain surgery
at 3 days old that lasted 4 hours. The encephalocele was reduced from 28cm to 12cm during the surgery. The remainder was left
becase she has functioning brain and a main artery in it. Her chromosone tests came back normal!! She isn't paralized
or deaf and none of her limbs are deformed. Her heart is in perfect condition as are the rest of her organs. She does
have oral delays and difficulties and cannot take anything orally because she does not suck. Therefore, she also
had surgery to have a G-tube put in so that we could feed her. They have told us that she is blind but that's not a problem
for us. We are just thankful that we have her to hold and love at home with us. She is growing everyday and learning to pick
up that head of hers. "A little Faith can bring BIG miracles!" Continue to pray for her!!
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