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

22-03-01

Mmmmm my little nunu where does mommy start. The last two weeks have been the worst. On Sunday 6 March mommy decided we needed to take you to the doctor the next day as you had a little cough. I just wanted to be safe cause you were going in for your op the following week. By monday morning you were very grump and not feeling great. We took you to the doctor and he admitted you straight away. Over night your little cough had developed into full blown bronchial pnuemonia. My precious little angel, so off to hospital it was. We had you in an oxygen tent for about three days and it worked, with all the antibiotics as well - 500mg a day - enough of a dose that an adult would normally have. The one great thing is we had another heart sonar done and the hole in your heart - yes the one the doctors said would never close - has DISSAPPEARED !!!!!!!! so we thought yay so much better for the anaesthetic you would have to go under. We thought wrong !!!! After almost 7 days in hospital we got to go home, but only for a day, you were scheduled to be in kloof hospital at 06:00 on Monday morning. We got to the hospital and went through all the doucmentation and took you up to the ward. The aneathetist came to see you - he had to tell us whether they would do the op or not - lets just say he was not too excited about your heart. The fact that you have little leakages (not major ones) puts you under immense danger. So we asked should we or shouldnt we and to my surprise he said we dont have a choice, cant leave you with a tube in you nose, - but it would be very difficult and very dangerous for you but they would do everything they can - NOT EXACTLY WHAT I WANTED TO HEAR !!!!! Needless to say all I did was cry and cry and cry and cry and cry ....... and cry. Daddy looked at me and said, well you know we dont HAVE to do this. In that instant we had to make a decision and daddy and I decided that its not about us and what we want, its about you and your quality of life. So we made the most difficult decision of our life to let you have the operation, knowing that there was a chance this would be our last few moments with you. NOT SO EASY !!! - ok need to take a moment here - far too emotional.
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