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, September 7, 2010

Lior - my Light

In December I was happily plodding along at work and got a call from the doctor telling me that I needed to have an amnio done. My blood tests had shown that there was a 10% chance that you would have Trisomy 18 or otherwise known as Edward Syndrome. The day before new years the specialist phoned us with the results - It was the happiest and saddest time of our lives. Happy because we found out we were expecting our first little boy - you have 5 sisters by the way - and the saddest because the amnio came back with a positive result for Trisomy 18. The doctors encouraged us to terminate the pregnancy but your daddy and I knew without a doubt that we wanted to give you the chance of life and that it was for you and God to decide when your time would be. Once they realised we wanted to continue with the pregnancy, they were insistent that I would not carry full term and that you would abort - this is all according to statistics – at least 825% of babies with this syndrome abort or are still born and those that make it through the birth generally don’t live longer than a couple of hours - but you hung in there and surprised us all. I cherished every moment I felt you move inside of me, besides the emotional side my pregnancy with you was glorious. You definitely were a cheeky little one you always kicked for mommy but when your daddy and your sisters wanted to feel, you stopped - no way were you going to move. One evening daddy decided that we needed to send you messages of love. So one by one we recorded our message of love, excitement and encouragement to you and once we all had our turn daddy would put the earphones on my belly every night so that you could listen to us. You loved it when I climbed in the bath, somehow the water calmed you and now when I bath you I see why – if you could bury your head in the water you would On 29 April we got ready for the hospital with great excitement and also a little afraid of the unknown. When the doctor delivered you and I heard you cry I could not stop my own tears – my little boy was alive! The doctors whisked you away and daddy stayed with you every second. A while later daddy came to me and with great sadness and a heavy heart had to tell me that you would not live longer than an hour. My whole world crumbled and I went numb. We knew that this was what would be expected and we did not want you to suffer so we told the doctors no medical intervention whatsoever, no incubation, oxygen, life support or anything, if you were going to make it through it would be on your own. I didn’t get to see you that night but you fought and stayed alive. I screamed at the nurses cause I wanted/needed to see you. When I finally got to see you, you were so tiny and fragile. I held your hand and cried and you slept through it all. The doctors still didn’t believe that you would make it through the next two days – after all Edward Syndrome is incompatible with life. Minutes ticked, hours went and days passed and you surprised us all. We spent and cherished every moment we possibly could with you. Our first goal was to learn to feed you through the nasal tube through you nose into your tummy, once we had mastered that mommy had to learn to change the tubes, the hardest and most emotional thing I have ever had to do. Three weeks after your birth we could take you home with the feeding tube, we could change the tube ourselves. The nurses were happy and sad – you had captured all their hearts. Your sisters were so excited that you were coming home – they had seen you the day after your birth – the nurses let them in the icu because you were not expected to live. The first week or so I refused to put you in your cot I was too scared and didn’t want you to be alone for a second, you slept in bed with me. I spoke to a genetic paediatrician and she suggested we go on to youtube and watch 99 balloons, I did this and watched the video clip with your sisters, we cried non stop. Daddy still hasn’t watched it and can’t bring himself to, every time he hears the narrators voice he has to walk away. Although you are our 6th child it is as though you are our first we are learning so much. You are now 4 months old and still on the feeding tube- you are not really interested in the bottle and when you do suck you don’t swallow but I guess you will get it right in your own time. I had to start work again today and it took all my will power, I did not think that I could pull myself away from you. I cried all the way to work all the way home and cuddled you and cried some more. You were definitely meant to be, you have brought so much light and meaning into our lives and to others – people that we don’t even know want to come and see you and touch you !!! - I am thankful every day that daddy changed your name to LIOR (meaning my light) cause you definitely are my light. Although we have not lost sight of the fact that our time with you is very limited, we cherish every moment with you and love you more and more each day. You are our perfect little miracle angel.