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 28, 2011
Tomorrow is my Birthday
The pic my big sister Tia - took. I think she should take up photogrpahy
Your baby is precious!! my baby girl turns 6 months old tomorrow too! :).. My baby girl Ayleen is also full trisomy 18. I'm so glad i found these blogs, for the past 6 months of my daughters life i've been so scared to look at anything that mentioned trisomy 18 on it. I'm just now getting the courage, specially to finally have some contact with other T18 moms!... Your baby is beautiful!!! :)
Hi There - I am so happy to hear from you. I have found that reading stories of surviving T18 families has made me stronger and helps me to cope - please keep believing and keeping the faith. I know it is so difficult and we have our moments where we break down but as you know our little miracles are all worth it
At first I did not know of this syndrome and followed at moomie and knowledge is power.I hear alot of people saying it takes a strong woman to be an angel mom(even though I hated that once but I think its true.Please allow me to say this,it takes a loving and patient woman to mother a T18 baby.Embrace him everyday.Sending my love
Your baby is precious!! my baby girl turns 6 months old tomorrow too! :).. My baby girl Ayleen is also full trisomy 18. I'm so glad i found these blogs, for the past 6 months of my daughters life i've been so scared to look at anything that mentioned trisomy 18 on it. I'm just now getting the courage, specially to finally have some contact with other T18 moms!... Your baby is beautiful!!! :)
ReplyDeleteHi There - I am so happy to hear from you. I have found that reading stories of surviving T18 families has made me stronger and helps me to cope - please keep believing and keeping the faith. I know it is so difficult and we have our moments where we break down but as you know our little miracles are all worth it
ReplyDeleteAt first I did not know of this syndrome and followed at moomie and knowledge is power.I hear alot of people saying it takes a strong woman to be an angel mom(even though I hated that once but I think its true.Please allow me to say this,it takes a loving and patient woman to mother a T18 baby.Embrace him everyday.Sending my love
ReplyDeleteHappy Birthday Lior,may the Almighty God shower you with abundant blessings so that you can continue to be a blessing to your family
ReplyDelete