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, November 17, 2011

Tia's message for you

Morning my precious pumkin. Last night your sister Tia brought her journal to me, she had written something on your behalf and asked me to post it. Mommy had to fight back the tears like never before. This is what she wrote, pretty much hitting the nail on the head:

Hi I am a T18 baby, considered not to live longer than 18 months. I am a baby who was born with holes in my heart and something wrong with my lungs. I am a baby that is very strong. I am a baby with almost no immune system. I have no pallet in my mouth - I have a cleft pallet and will probably never talk. My feet are clubbed and my hands are a little bit bent. I have a curved spine and my hips are out of place and will most likely never be able to walk. I never know when I am going to say goodbye to my mommy and daddy and the rest of my family but I am sure to enjoy every moment I have with them. I am now nearly 19 months old and the hole in my heart has closed. I still have a valve that doesnt close that causes lesions in my heart. I am almost on my way to crawling - well in my terms anway - and I cant wait !! My daddy tells me everyday what a big boy I am and how strong I am getting and I think so too. My hands, arms and legs are always busy, i think I may even be getting some muscles :)

Well now you know me, I am a T18 baby and I have a story to be told.

I AM COMPATIBLE WITH LIFE

I am so so proud of your sister. Out of all of them she is the one that has battled the most emotionally - or at least shown it the most. They all love you dearly.

You have been doing really well the past few weeks, only really battling with the heat terribly, but thank you to some very special angels, we are able to buy an airconditioner for you so that life can be a little more comfortable and bearable.

We have started taking evening walks with you and boy do you love it. No-one can tell me you dont understand, we notice that you do. Lets put it this way - you normally spend your days in just a t-shirt or only your nappy because it is so hot and you cannot regulate your body temperature, but just before we go for our walk just to be on the cautious side I put some pants on you.  You just know we are going on a walk and you get so excited, you arms and legs just get going and you become so verbal - its just too precious. Needless to say your sisters keep fighting about who is going to push you :)

So all in all, even though for the last three nights you have been a little restless, you are doing really well.

Love you sweet pea

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