Caleb has started being a lot more active. He loves to bounce as soon as you pick him up. Sometimes it's hard because he really gets going and I'm afraid to drop him. But he enjoys movin'!!
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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.
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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.
jeannette! how precious is that...he almost looks ready for an excersaucer! i love it!
ReplyDeleteI just found your blog today when I was Googling Tomi Ivsic's name.
ReplyDeleteI just wanted to introduce myself and a support group you might be interested in, Broken Hearts of the Big Bend. We have many families in the Gainesville/Ocala area, and most of our families are patients at Shands. My e-mail address is ktchavez (at) comcast (dot) net.
Caleb is beautiful; your story is heartening. A true miracle.
Lol. Caleb reminds me of the Eveready Energizer Bunny. He keeps on going and going... :)
ReplyDeleteHi there! One of your blog readers is one of my blog readers - and so I found my way here and boy oh boy am I in love with little Caleb. He is beyond precious ..... I will become a follower so I won't miss any super sweet videos!!
ReplyDelete