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.

Tuesday, December 6, 2011

The sound of a miracle

Morning mommies precious little pumpkin.

I got home from work last night and you were a little on the niggly side, neither daddy nor the girls could get you settled. So mommy decided to give a bath and try put you to sleep - you battled a little but once you were out ...... well you were out. You slept really well last night and while you were sleeping I lay in bed listening to your breathing, it was SO MUCH deeper and each breath seemed somewhat longer than normal, but it didnt concern me - because somehow in my heart I knew you were fine. Even though your breathing pattern was different you didnt have any difficulty breathing and you seemed more comfortable, as if your lungs were getting the much needed air that they want.

I must have layed there for an hour or two listening to your breathing before I fell asleep, but in those one or two hours, although I have always known, it really really dawned on me as to what a little miracle you are. How I have always prayed for God's richest blessings and I realised last night that he HAS given me his richest blessings, YOU, YOUR SISTERS AND DADDY !!! - what an awesome blessing to have and what a blessing it is to be able to listen to your breathing - the sound of a miracle. How many people get to hear the sound of a miracle every single day - not many !!

Love you baby boy
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