Letters to Lior
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 25, 2013
Wow, how time flies, the last three years have without a doubt been a heck of a roller coaster ride – but mostly a gracious and wonderful blessing from our heavenly father.
When I was just 20 weeks pregnant with you we found out that you had Trisomy 18, something we had never heard of. This would mean that you have an extra 18th chromosome in each and every single cell of your little body. I remember so clearly, we were in Woolworths and I received a call from our doctor and he told us that you would probably abort yourself and if you were born you would never live long than a few hours and would be completely disfigured and disabled and my response to him was, - this little boy is my son, my flesh and blood. How could I abort him, it is not my decision but the decision of our little boy and our father above.
There was no need to think, the answer was an outright no. This little fetus inside of me was a life, regardless of the diagnoses. Daddy and I did our research and found lots of negative things and sad stories, but we also found a lot of success stories too. As we researched, you grew and grew. Even though you were still in my tummy, as a family we nurtured you. The girls would talk to you and put their hand on my tummy so you could feel their warmth and love. Daddy made recordings of all of us talking to you and everyday he would put earphones around my tummy and play these messages to you over and over again.
We put our faith in God, along with lots of hope and prayers, and decided that should you be born we would leave it up to you and God to decide for how long. We also decided that we would do comfort care and smother you with love. We knew our decision would test our belief, faith, values, our minds and most of all our hearts. On 29, April 2010 you were born and your condition was below that fine red line. It was the hardest decision that we had to make but we stuck to our choice of comfort care and it was a hard and emotional first few days, with lots of prayers, a wonderful and supportive neonatal team and very little medical intervention – just pure unconditional love. You pulled through and proved us all wrong. You fought and chose to live and continue to fight and choose to live
Yes, it’s been hard, yes it’s been emotional and we all have our emotional moments and boy they get bad and tough. But know we don’t regret our decision, when you smile at us or hold our hand, hold your rattle and hit your toys with as much force as you can muster up, or push yourself just that one step in your walking ring or give us a little laugh, these little things that most parents take for granted, make it all the more worthwhile.
You have such a pureness about you that we all strive to obtain some or other time in our lives
Tuesday, April 2, 2013
It was so heartbreaking because you could hear that you were in pain and we just couldnt figure it out. The pain meds took about an hour to set in and in the hour that it took to work, mommy had to give you some oxygen. Well you were not impressed about that at all, but we had to do what we had to do. Fortunately it settled you and all was good.
Still loving all the attention from your sisters - one really loved little boy !!!
Tia and Diana also take every opportunity they can get to take photos with you, and I am glad. Building memories is just so important