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 Hi, My name is Gilianny and I have a baby boy named Noah
with full Trisomy 13 and a Dandy Walker Malformation. When I was
pregnant around the fifth month of pregnancy we discovered that
there was something wrong with my baby’s kidney’s and when I was in
my eighth month we left Brazil and moved to Gainesville-FL to seek
better treatment for him. In the beginning he was diagnosed with
Meckel Gruber, which has 100% mortality rate. We were told that his
kidneys were polycystic and that they should not be functioning in
the womb and would not function outside of the womb. However, after
my c-section on March 19 they discovered that his kidneys which had
shown up polycystic on 5 separate ultrasounds were perfectly normal!
They did genetic testing and after almost 11 days he was
diagnosed with FULL TRISOMY 13. While this was devastating to us,
because the doctors told that he probability of survival was maybe
one week, one month, maybe one year or he could be one a million and
live a little longer... we still felt blessed by God because his
original diagnosis was one devoid of any kind of hope that any other
diagnoses seemed better. In that same day a great friend of ours
share with us about this web site Living With Trisomy 13, and it was
really good to see so many of these precious children living a happy
life here on earth. We are really blessed to have little Noah in our
lives. He is such a fighter and a strong example to us. He has a cleft in his soft palate, extra digits (except on his right
foot), rocker bottom feet , craniocinestosys (medium trigonocephaly),
he is also blind but he definitely he can see light, he has
infantile spasms which we are currently trying to treat………..He has
no big problems with his heart, and has never had apnea. He has a
lot of difficulties in his feeding ……
After two weeks in the NICU, they sent us home. He had an NG tube
and we were trying at the same time teach him how to use the bottle.
In the very first night he pulled the tube out, and after few days
he was using only the bottle. He started having a really bad reflux,
and we started him on Zantac. A few times when he got real mad we
noticed a hernia in his groin and on May 19, he had his first
surgery. We struggled a lot to decide what was the best for him, we
were concerned about anesthesia, apnea …But We decided trust in our
Lord and Savior Jesus Christ.
He came through the surgery just fine without any effects from the
anesthesia. Unfortunately he got a third degree burn in his bottom
during the surgery. Two weeks later they decided that he needed a
skin graft. I almost lost my mind, it seemed too much for him, and
we didn’t know what to do.
 We had the same concerns that we had in
first surgery, plus they never told us what happened to cause the
burn in the first surgery….One more time we placed our trust in God
and asked Him to take care of Noah. During the surgery the surgeon
saw that grafts were not necessary and instead was able to do skin
flaps, which made the recovery much easier. Noah had to spend 3 days
without food and without pressure on his bottom, which means we were
not able to hold and console our baby for a lot of time. After 5
days, they sent us home and his feeding issues got worst, some of
the stitches on his bottom opened up and we had a big open wound. We
have to wash often and scrub and take off the scab. It was terrible
see my baby crying and suffering. However, time did go by and he did
get better. After 3 month we have only a big scar. Noah is such a big trooper, he can communicate very well…Even in
during the time that he was recovering from his burn he never lost
weight. During the process of healing his bottom we went to Brazil and spent
almost 5 months there, it was really good to be able to show
everybody our miracle boy.
Now we are in Florida (December 2009) and we are trying to figure
out what is wrong with him, because He sometimes seems to be in a
lot of pain and we don’t know why. We discovered recently that he
has gall stones, he has an appointment with the GI clinic next week,
and we hope find out why he is having trouble holding down more than
2 oz and why he throws up so much. Noah is such a blessing in our lives. He has such a strong
personality. He is very vocal about his needs and has no problem
letting us know when he is not happy with something! He loves to
chew on both hands, preferably both at the same time if possible. He
has just recently started smiling and it lights up his whole face.
He can airplane when we put him on his belly but he has to grunt
when he does it. He loves kisses and hugs, and while he sleeps well
in a crib he prefers to be rocked to sleep. He loves to music and
always calms down when we put a cd on for him to listen to.
We thank God everyday for the blessing he has given us. Even
though he is only nine months old he has already touched so many
lives. I cannot count how many people pray for Noah on a daily
basis, nor do I know how many people have heard and been encouraged
by his story. I hope and pray that his story may be and
encouragement for you as well. Gilianny Nickerson
giliannynickerson@hotmail.com
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