Before birth Lior was diagnosed with Full Trisomy 18. Below is an explanation to help you better understand. Most T18 mommies had never heard of the syndrome until their babies were diagnosed. This blog is a day to day account of what Lior goes through and how the syndrome affects a child.
Letters to Lior
Trsiomy 18
There are 23 pairs of human chromosomes. In Trisomy 18 (Edwards syndrome), there is an extra chromosome with the 18th pair. Like Trisomy 21 (Down syndrome), Trisomy 18 affects all systems of the body and causes distinct facial features. Trisomy 18 occurs in 1 in 3,000 live births.It is three times more common in girls than boys. Unfortunately, most babies with Trisomy 18 die before birth, so the actual incidence of the disorder may be higher.Infants who survive, experience serious defects and commonly live for short periods of time. Trisomy 18 affects individuals of all ethnic backgrounds. Trisomy 18 severely affects all organ systems of the body.The majority of children who are born with Edward's syndrome do not live past their first year of life. Their average lifespan for half of the children born with this syndrome is less than two months; approximately ninety to ninety-five percent of these children die prior to their first birthday. The five to ten-percent of children who do survive their first year experience severe developmental disabilities. Children who live past their first year require walking support and their ability to learn is limited. Their verbal communication abilities are limited as well, although they are able to respond to comforting and have the ability to learn to smile, recognize and interact with caregivers and others. They can acquire skills such as self-feeding and rolling over.
Thursday, April 7, 2011
01-10-2010
When I got home yesterday I could see daddy was not entirely himself and he told me he had a very emotional day yesterday. Now dad being dad and I suppose being a man, it is very hard for him to show emotions, besides the fact that he tries not to because he feels he needs to be strong for mommy and your sisters. I am glad he did. It has been a long hard road so far - loving every minute we have with you - but as hard as we try it always remains in the back of our minds - will today be the day, will you prove the doctors wrong again and continue life past 18 months. Every day with you is such a blessing
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