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

15-09-10

You were determined yesterday not to have your feeding tube in, you pulled it out twice !! I think you almost gave ouma heart failure - but thank goodness daddy came to the rescue and put it back in - you definately were'nt to impressed and didnt want much to do with dad for a little while - so small and yet you know exactly what you want. Daddy said you settled very quickly but I knew we would be in for a long night - we always are when we put a new tube in.

Boy oh boy did you give me a hard time with your evening feed - it took almost two hours to feed you. We got you into bed at about half past ten and I think Mommy and Daddy just fell into bed we were so tired, but that didnt last long. At 00:30 you had me awake and for the life of me I just could not figure out what it was that you wanted so we were up and down - in the bed with mommy and then back in the cot - changed your nappy - back in bed with mommy - back in the cot and so it went on. When you finally fell asleep it was 04:30 and time for mommy to wake up and feed you - What a night. Feeling and looking a little like a zombie today but I dont mind - you are most definately worth it !!
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