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

20-09-10

Thursday night definately was not a good night - you just wouldnt sleep and kept on crying - no matter what we did it didnt help, even your sisters came running into the room at 4am cause they thought I hadnt woken up to your crying. Needless to say mommy didnt go to work on friday - probably would have had to put match sticks in my eyes. We decided to take you to your paediatrician and well you have a slight ear and throat infections, thank goodness we took you and caught it in the beginin stages. Friday night we still didnt have much sleep - bearing in mind this is now the 4th night in a row, but you were a little better. You were so bushed by saturday I put you down at 23:00 and you only woke up at 08:45 on Sunday, all refreshed and ready to go. At least you were feeling better. We went to visit your little neice on sunday, she is soooooo tiny and boy does she have a voice on her !! Your uncle was so happy to see you, but the emotions got the better of him and he started crying and then mommy was crying and granny was crying and then the girls started crying - wow what an emoional family time. We are with you all the time so it is natural for us to feed you through your tube, and see it taped to the side of your face, (actually we dont really even see it any more) but your uncle seemed to battle with the emotions. For the one person who did not want me to go through the pregnancy, he loves you so much !!!!
Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)