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.

Wednesday, May 4, 2011

The number 18

Birthday celebrations over - for the next week at least and then they start all over again.  You had a good night last night my little pumpkin, mommy only had to get up twice - not used to so much sleep :).

Today is a bit of an emotional day for mommy, the number 18 keeps running in my head, as hard as I try I cant seem to stop it.

The doctors have given you a life expectancy of 18 months, you are now twelve months, and according to them it gives us another 6 months ......  it feels like I have only had you for a couple of weeks .... I NEED more time, I WANT more time, I EXPECT more time, just GIVE me more time pleeeease !!!! The more I love you the harder it gets, and I know that it is the love that I have for you that will help us through, but each day seems to be smacking me in the face so hard and fast I dont know what has hit me. Before I know it the day is over and another day begins, another week and then another month.....

In my heart I know, you are a healthy Trisomy 18 baby and I do believe you will be with us a lot longer than expected, but those thoughts seem to be creeping in, no the seem to be forcing their way in and I need to force them straight back out and I can only do this by holding and cuddling you, so while I am away from you, I look at your picture and they make me smile, fills my heart with so much love and laughter - this at least helps.
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