Brianna Gives Hope: Heartbreaking News

Sunday, June 7, 2009

Heartbreaking News

In an earlier post I asked for prayers for Laurie, her husband and Lil Toot being delivered last Tuesday. Sadly, Lil Toot was born into heaven Tuesday night. I can't imagine the sadness the parents must be feeling. I also find myself wondering why her, why are some of these little angels destined to live longer than others. Why is Brianna still here yet others only have minutes or hours? We'll never know the answer. I only ask that you pray for peace for Laurie and her husband. Continued prayers too for Annabel who is recovering from surgery. Brianna is so much like Annabel, all smiles and full of fight. God Bless Them, all of them, those still here with us and those sitting in the lap of Jesus.

2 comments:

CathyJune 7, 2009 at 10:55 PM
I was heartbroken when I read about Lil Toot. You can't help but will them to live, just for even moments. Of course, we want them to live longer than moments. Thank you for the prayer petitions for Annabel also. Give sweet Bri hugs until we see you in JUly.
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UnknownJune 8, 2009 at 2:19 PM
Was so hoping for a such a different outcome..will keep them in my prayers too.
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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

Sunday, June 7, 2009

Heartbreaking News

2 comments:

Our Family, Nov 2007

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