Brianna Gives Hope: Welcome to our Planet

Tuesday, January 13, 2009

Welcome to our Planet

TUESDAY, JANUARY 13, 2009 07:36 AM, EST
Hello everyone,

Life here on Planet Trisomy 18 is not so bad. Brianna is improving daily. She is sitting up all by herself for a good 10-15 minutes and when she is not sitting up she is trying to crawl. She now rolls over, pulls her knees up underneath her, gets her arms in position and pushes on all fours in one quick move. Smiles so big and bold once she is up. Then she rocks back and forth moving her knees forward. She is so close to moving her arms but they are just so heavy for her. Remember these babies have very weak upper bodies so for her to lift up in on all fours is a tremendous milestone.

Jerry and I are looking forward to this coming weekend. We are going to meet a little girl (with Trisomy 18) and her family. Her name is Annabel Grace and she is......3 1/2 years old!! To see this gorgeous little girl you can visit her website. www.annabelgrace.blogspot.com

Have a blessed day.

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Definition of Trisomy 18

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. Sadly, this condition is considered "not compatible with life". 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.

But oh, how we love these special little babies. When Brianna was born we were told she would probably leave this earth within 24 hours...but look at her now. 24 months old, healthy, adorable and amazing. God has been so good. Brenda

Bri's Medical Condition

Brianna was full-term born on April 12, 2007, weighing 5 lb 18 oz and 18" long. Her Apgar scores at birth were 8 and 9. Approximately 15 hours after her birth we were advised of the tentative Trisomy 18 diagnosis.

Immediate health issues had to do with her heart: Mainly, a VSD (Ventricular Septal Defect); PDA (Patent Ductus Arteriosus) ; and a PFO.

Open Heart Surgery at 4 months and

G-tube placement before we came home.

Eye surgery in Spring of '08 to correct cross-eyes.

Tubes placed in ears in Fall of '08 hoping to quash the numerous ear infections.

Scan of abdominal section in Dec. '08. Everthing appears normal.

Brianna takes formula by g-tube but eats baby food by mouth. She can hear, see, is rolling over, sitting up, trying to crawl, playing with toys, says "da da"; "do it, do it, do it" and various other sounds. She is the happiest child we have ever known.

We are so very blessed.

Brianna Gives Hope

Tuesday, January 13, 2009

Welcome to our Planet

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Our Family, Nov 2007

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