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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.
http://thecutestblogontheblock.com/facelift/darlingbutterflybannercopy.jpg
Definition of Trisomy 18 (Edward's Syndrome)
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.
lOVE THAT OUTFIT!
ReplyDeleteHello Caleb and family! We were so encouraged and inspired to read your story thanks to a friend who lives in Gainesville and brought it to us. I live in Jacksonville, (Orange Park,) and have a great niece, Lilly Hollowell who is a Trisomy 18 baby. Lilly was born on the 4th of July, 2010, in North Carolina and sent home the same day to die. The dreadful doctors in that tri-state research area refused to treat her in any way except as 'incompatible with life.' So I found her some wonderful, wonderful, U of Fl doctors right here at Wolfson's Children's hospital. They took Lilly in at 3 months old, 4lbs 7oz, (1 lb lower than her birth weight) and fattened her up to 5 lbs and loved her for 2 weeks before putting a pulmonary artery band on to keep the fluid away from her heart. She came through it with flying colors,proving to be the little firecracker that she was born to be and thanks to prayers from all over the world and doctors and nurses who are believers. She will have the hole in her heart repaired when she is 10 lbs or close to it back at Wolfson's. She has been back home in North Carolina since October on an NG feeding tube and is slowly but steadily gaining weight.
We are so excited and thankful to know about Caleb's journey and to see his absolutely GORGEOUS face! Watching him laugh at the paper on the table brought tears to my eyes.
My niece, Lisa Hollowell, the mommy, will be contacting you soon as I sent her the article from the newspaper and Carie (Stinky's mom) gave her your blogspot and she gave it to me.
I hope you 2 families will have a chance to meet when they are back here for Lilly's surgery since you are so close. In fact, Lisa lived in Ocala for several years before Lilly was born.
I saw that Caleb has a Urologist in Jax. If you ever need a place to stay here, I have a whole upper story with enough bedrooms and bathrooms for your family and would be honored to have you. (We love these special babies!)
Please know that we will be following Caleb's blog and he will now be added to our prayers along with Lilly. As we know, God is in control and has plans for these babies.
I am on facebook. Pam Bowers
email pam@thebowersplace.com
and here is Lilly's blog
pray4lilly.blogspot.com
Lilly and Caleb look like they could be brother and sister.
God Bless you,
Pam
January 6, 2011 6:05 PM