Kristopher "Kritterbug" ~ Full Trisomy 13
12/13/2005 - 05/19/2012
My
son Kristopher was born with Full Trisomy 13 on 12/13/05. He was 6lbs
8oz. and had a cleft lip and palate. He had rocker bottom feet and a
little finger attached to his pinkie. He was in the NICU for 10 days
until we received his bloodwork back that identified him as having Full
Trisomy 13. We brought him home under the instruction to "Make him
comfortable at home". During the first year of Kritter's life, he was in
and out of the hospital a lot. We had his lip repaired at about 5
months of age. We had a peg tube in place for feeding as he could not
swallow anything due to the cleft palate. At his first birthday he
weighed around 12 lbs. When he was 13 months old, we moved from Fl to
Tx. We had a WONDERFUL pediatrician that set us up with every doctor
that we needed for him. We saw GI (didn't like them ), Pulmonology
(LOVED), Cardiology, Nutrition, and Nephrology. His GI dr advised he
didn't need to see him after a few visits so we found someone else much
later. Kritter had cortical blindness, he could only see out of his eyes
in certain spots. He was completely deaf. He loved being outside, he
would laugh and laugh and his eyes would get all crazy from the
sunlight! After
living in TX for just a few months, he began to gain
weight and filled out! He began OT, ST, and PT. We had his cleft palate
fixed and attempted oral stimulation but he never took it on. He
flourished in Texas, going as far as not being admitted to the hospital
for over a year! He did really well! He began to go to school, a PPCD
program at an elementary school and he got to ride the bus which he
loved! I got pregnant in 2009 with our first daughter Calleigh. I had
low amniotic fluid and was put on bedrest about 2 weeks before her due
date. The same day, Kritter stopped breathing. 7 times. The first time
was during therapy. I had to give him CPR. Thinking it was an isolated
event, I declined an ambulance ride to Children's. 30 minutes late, we
were on our way as he did it again and again. He was discharged a few
days later (it was from seizures). 2 days later it began again. He was
admitted again. The day before I had Calleigh and still on "bedrest" he
was discharged from the hospital. He also was at his heaviest weight,
42lbs! at the age of almost 5. He and Calleigh were so cute together! He
rolled over onto her several times and she did the same! I have video
of them "beating up" on each other. During the next year and half, he
began to decline and he lost a lot of what little strength he had. He
began to sleep a lot. On May 19th, the day after our 10th wedding
anniversary, he passed away in his sleep. He had a slight cold so I got
up with him in the middle of the night to give him a breathing
treatment. We snuggled in his bed. Then I went to bed. When my husband
got up a few hours later, he found him. It was very traumatic. We knew
in the back of our minds that we could lose him any day and we always
said when it was
time for God to call him home we would be ready, but
still, in your heart of hearts you never want your child to go. I found
out I was pregnant 3 days after he passed, then had a miscarriage a week
later. Last year on Sept 13th, I had another little girl we named
Gentry. She is very sweet like Kritterbug, very gentle and she smiles
ALL the time, like he did. Calleigh remembers him a lot. We talk about
him everyday. She thinks he paints the rainbows she sees. When ever she
sees one, she always calls to me and says, "Look what my Bubba did! He
paints the rainbows because they are beautiful and he wants me to see
them!" Very wise for a four year old! My advice to any new parent,
especially one with a Trisomy child? NEVER ever let a Dr. tell you your
child doesn't have a chance. Even if there is a small one, its still a
chance. Do I believe that God only gives you what you can handle? No, I
believe God is what gets you through it. Having Kristopher is something I
would do over again. I loved him.
Leigh Anne and Kyle
We hope these stories of children with trisomy will inspire you. From
cleft lips to contagious smiles, group of families are here to offer you
support as you begin your trisomy journey. It seems we only hear of the
problems that come with a child having Trisomy . There is so much more
to these sweet lives. Each day the living children bring joy to their
families as they accomplish simple tasks or reach a milestone, the
angels remind us that life is short but a blessing all the same and they
will forever be engraved in our hearts. Be sure to check back for our
next story or update and until then....Embrace life one moment at a time
~ Vanessa
