Before birth Lior was diagnosed with Full Trisomy 18. Below is an explanation to help you better understand. Most T18 mommies had never heard of the syndrome until their babies were diagnosed. This blog is a day to day account of what Lior goes through and how the syndrome affects a child.
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
22-03-2011 continued
Lets carry on - The nurses were not quite sure what to do with mommy or what to say to me cause I was basically hysterical I was crying so much I couldn?t talk (daddy was downstairs - I think trying to gather himself to be strong for me) and the nurses brought me a box of tissues and tried to console me ..... not quite succeeding. The time came when we had to take you to theatre - they allowed us to carry you in....... "walking the walk" - I felt like a prisoner in my own body, going to a death trap - I know it all seems so negative - but I am human after all and I do feel these things, as hard as I try not to. Anyway, you went into theatre later than scheduled but you were sucking so hard on your dummy and a little restless. Eventually when they came to get you I tried so hard not to cry and I remember saying to you that I would keep your dummy and that you had better come back and get it from me and that I love you so so so much - (I know it sounds silly - but when you are emotional, silly just does not matter. Every second felt like a million years, we now had to sit and wait for two hours and as hard as we tried to block it out, all the negative thoughts creep in - what if !!!! It felt like the doctor would come out at any second and say I am sorry, we did all we could. After two long heart wrenching hours the surgeon came out and my heart dropped straight to my toes, I think he saw the panic in my face because before daddy and I could get to him he put his hand up (as if to say don?t panic) and said that everything went well, there were no complications. Eventually they called us to get you from the recovery room and all you did was cry - I mean what else could you do - but the thing is it wasn?t really a cry it was more like you were saying a distinct owe. Even the nurses in the neonates had a good giggle cause it was so clear. My sweet little angel, hearing and seeing you like that broke my heart. You just wouldn?t settle, eventually the sister in neonates decided that they needed to put you on a pillow on my lap. The second they did this you stopped crying, just like that - like turning a tap off, but not for long. The anaesthetic obviously started wearing off and the pain set in. They gave you all the normal pain meds that a baby would receive post op, but this did nothing, so they eventually had to resort to giving you morphine to ease the pain. So little yet your little body resists so strongly. Even with the morphine running through your veins you refused to sleep, you forced your little eyes open and held on to daddy for dear life, but at least you were pain free, we at least we think you were. Eventually at 8 that evening your little eyes just couldn?t any more, you finally drifted off and had a good night. You slept most of the Tuesday which was good for you, but then we had to try and start weaning you off the morphine, you didn?t do too badly although we did have to up the dose every now and then just to get the pain under control and manage it. Wednesday was good, you also slept pretty much all day and all night - which I was really grateful for cause when you sleep your body heals quicker. Thursday night it all began, colic set in and from 9 in the evening to 3 in the morning all you did was cry - this still has not changed. You are on so many pain meds but nothing seems to work. The more you cry the more the tube leaks - which makes mommy panic (quietly). The surgeon says this is normal, but I still don?t like it. I just wish we could put the peg on, but I know we cant until your wound heals some more. I never dreamed this would be so difficult and so emotional. I mean I knew it would be trying times but not as difficult as it has been.
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