Brianna Gives Hope: Living a "Normal" Life

Friday, August 24, 2007

Living a "Normal" Life

FRIDAY, AUGUST 24, 2007 08:59 AM, EDT
Living a "Normal" Life.
We attempted to continue our life as normal. But anymore, what is normal? We are now waiting for Brianna to either reach four months of age or weigh 10 lbs. in order to have open-heart surgery to close those two holes in her heart. Going to any of Brianna's doctors can be so depressing. They keep reminding us (gently) about her condition. That it is not compatible with life. We are fully aware that having the heart surgery will not SAVE her life, it will only keep her here a little longer with us. Babies with this condition, if they live to be one year old, are considered long-term survivors. Try living with that on your mind just about every minute of every day. But we know our baby girl is one heck of a fighter. And we just get through every day by loving her.

No comments:

Post a Comment

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

Friday, August 24, 2007

Living a "Normal" Life

No comments:

Post a Comment

Our Family, Nov 2007

Blog Archive