News about our baby

Dear Family and Friends,

We recently found out that our unborn baby girl has been diagnosed with Trisomy 18, also known as Edwards Syndrome. After Down's Syndrome, Trisomy 18 is the second most common chromosomal disorder diagnosed in pregnancy, occurring in 1 in 3000 live births annually.

We are still learning about it ourselves and we wanted to share some information with you so you will understand what we are facing. Trisomy 18 is linked with high rates of stillbirths and early infant deaths, so you will understand we are very worried for our baby.Please visit the links below to learn more about how you can support us through this process.

Sincerely,Chrissy and Vinnie

A note from Chrissy - At this time I am placing the current situation into God's hands. He has created this baby girl and He has allowed her heart to beat. It is not my place to be the reason for her heart to stop. Therefore, we have decided to carry our baby girl to term. God has brought us to it and I truly believe that He will see us through it. I have faith that He has a plan and that He has the power to heal our daughter.

I just ask that you keep our family in your every thought and every prayer. I also ask that you please be patient and not call me to discuss anything further. When and if I want to talk about it I will come to you. Please feel free to email me if you'd like. Thank you for your support and your understanding!

Love, Chrissy

Edwards Syndrome : Edwards Syndrome (Trisomy 18) is a chromosomal abnormality where there is an extra chromosome present in every cell of the body. This is an example of where "the more the merrier" is not true. This extra chromosome means that every cell has extra information encoded into it. The extra information causes confusion in the way that the cells are formed and results in the potential malformation of all of the body systems. Just like with Down's Syndrome (Trisomy 21), there is a wide range of how this condition will play out (what the doctor's will refer to as your child's phenotype). Unfortunately because there is more information encoded on the 18th chromosome, the severity of this condition is greater than that of Down's Syndrome. Current studies show that while 1:1500 children will be diagnosed prenatally with trisomy 18, only half that number (or 1:3000) will be born alive at full term. Of those who survive to birth, only half will make it to two months of age, and only 10% will survive to their first birthday. Children who live can be an important part of their family and community, but are profoundly developmentally delayed.

+ Associated link: http://trisomy18support.org/modules/wfsection/index.php?category=3

These links may be useful in helping you understand Trisomy 18.

What is Trisomy 18?

http://www.trisomy18.org/whatist18

How Trisomy 18 is Diagnosed

http://www.trisomy18.org/diagnosis

For Family and Friends: how to support the parents

http://www.trisomy18.org/friends

Currently reading :
Trisomy 18: A Guidebook for Families
By Carol M. Stenson Release date: January, 1999