Kristopher "KRITTERBUG"
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 Story from http://trisomyblog.blogspot.com.au/ |
Story of Kia Lien Emma~Lee Wong - Full Trisomy 13 Hello, My name is Kia Lien Emma~Lee. I was born on May 6, 2004 with Trisomy 13. I lived for 17 hours and went to heaven on May 7, 2004. My Mommy and Daddy knew I had Trisomy 13 when my Mommy was 24 1/2 weeks pregnant with me. The doctor's wanted my Mommy and Daddy to terminate the pregnancy but they decided that they wanted to get to know me and that only God would decide what was going to be my fate. My Mommy and Daddy want other parents to know what it was like knowing that I had Trisomy 13 and they hope to help anyone who thinks there is no hope for their baby.
My Mommy wanted to share our experience with Trisomy 13 so that she could help other Mommies and Daddies get through the diagnosis of Trisomy 13 with their babies. We have lots of experience to share and it can sometimes be scary and lonely. Doctors can be very clinical and are can be less sensitive about the experience of Trisomy 13. My Mommy found that she received a lot of information through other Mommies and Daddies who had experienced Trisomy 13. There are other Trisomy 13 babies and children around the world who are still alive. The parinatologist told my Mommy and Daddy that "death was imminent" and that "Trisomy 13 babies do not live". My Mommy has found these statements to be generalized and that in fact there are surviving Trisomy 13 babies and children. Our Precious Angel Kia Story from http://kiasmom.tripod.com/ |