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

8 September 2010

It is still so hard to leave you every morning my little angel, and I dont think it will get any better.

At least when I got home last night you showed your excitement to have me home and that just made my heart swell with so much love. Your sisters are loving every minute that mommy is not there cause they get to change your nappies and entertain you for most of the afternoon and when I get home I think they are quite relieved to hand you over! - Ha they thought having a baby was easy !! I love the fact that they get to do these things with you, they are building memmories that will be with them for ever

It gets harder and harder every day and I feel more guilty every day cause I know that the girls are not getting as much of the attention that they should or want to get - I just need to be with you every second I can !! I know they understand but I am sure they feel it the lack of it right now - I dont know how to divide myself :-(

I found a website today where a father has made an amazing dedication/memmory of his little girl who has passed on. She also had Trisomy 18. I managed to get in contact with him and he is quite happy to help us answer some questions - obviously to how it pertained to their little girl - but maybe some of it can help us and give us support.

On to happy news - Your little niece will be welcomed with loving arms into this world tomorrow. Your uncle is so excited and cant wait to meet his little angel - I cant wait to meet her either. I am not sure of her name yet, they havent told anyone, they want to introduce her when she is born. We will have to take you to meet her in a little while.

I am sitting here and counting the minutes to when I can leave and get home to my family. I love you all so much
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