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.

Friday, April 15, 2011

Ting - ting - ting -ting - and the lightbulb goes on

Hellooooo my little sweetie pie (yes I could just eat you up), slowly but surely your are getting back to your normal bubbly self, the only problem now is you seem to be nauseous all the time, not sure if it is because you may be feeling a little constipated, although your tummy is working it is sort of like a putty and as daddy would say, little ironies, so daddy is going to take you to the paed for a check up and see what is what.

So mommy is really thinking about aunty Taryn (litte Mik's mommy) , she is really not feeling well, she is very sick and feeling down. I read her blog today and I just wish I could be there to give her a great big hug and have a good cry with her and be able to comfort her and say I know how you feel, something I think we both need.

I know for people not in the same situation or as I would normally say, the same roller coaster ride as us, this may sound strange, but reading aunty Taryn's blog today has finally hit the nail on the head for me, let the bell ring (ting -ting), or the light shine or knocked some sence into me. We have both blamed ourselves for you and little Mikayla having T18, asked ourselves what we could have done to make you "healthy", we have both asked why God didnt answer our prayers, but in fact GOD DID ANSWER OUR PRAYERS . All through our pregnancies, we asked for healthy babies and although you and little Miks both have T18, you are still healthy. You are as healthy as can be for a Trisomy 18 baby. Although there are times that you stop breathing and have to be fed through  Mic-key and although you have a cleft palet and rocker bottom feet and a slight case of club foot, and although there may be neurological problems and although your hands arent completely open as a normal baby's would be, and besides the nasty post nasal drip and the constipation, you are generally very healthy - and isnt that what we asked for? Healthy doesnt mean NO DISSABILITIES - healthy means no sickness. You dont have a sickness, you have an extra chromosome.

As hard as it is, it makes me feel better to know that God did think of me and daddy and of you, and that he did give us what we asked for. I didnt ask for a "normal" baby, I didnt ask for a baby that does not have Trisomy 18, I asked for a HEALTHY baby and that is exactly what I got. So thank you heavenly father for listening to my prayers, thank you for keeping our precious little boy healthy.

So I will be keeping aunty Taryn and little Mikayla in my prayers, I will be praying for their health and for them to keep strong. I will continue to pray for my healthy baby to remain healthy.

Love you lots little pumpkin

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