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

Christmas wish

Why is it that when a baby naps for 5 minutes they can keep going for another 10 hours !!! Lior only went down at 12 last night after not having slept for the entire day yesterday and was awake at 3 this morning, so feeling a little tired and when I am feeling tired I am emotional. It did not help that I listened to the Christmas wish on highveld this morning. It hit home in a really big way. My prayers and well wishes go out to the family - I know what you are going through - in the same situation. Getting a little emotional writing this so going to log off and hope that the day does not drag !! I fear I wont stop crying today !!
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