Kia Lien’s Story
“My Mommy was given some hope, and a gift that she was able to love, hold and acknowledge.”
Kia Lien Emma-Lee, Trisomy 13, 5/6/04 – 5/7/04, Moose Jaw, Saskatchewan, Canada
Hello, My name is Kia Lien Emma~Lee. I was born on May 6, 2004 with full 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.
My Mommy was given some hope, and a gift that she was able to love, hold and acknowledge. She would have not been able to do all that if she had listened to the doctors and terminated the pregnancy.
Lorie Scott & Gaymond Wong
Kia Lien Emma~Lee Wong
May 6, 2004 – May 7, 2004