03/13/2022
It is Trisomy 13 Awareness Day today and Trisomy 18 Awareness Day on Friday. This is a small glimpse of what it actually means to have a baby with T13 or T18. 💚💛💗 Google can not tell you everything.
If you type in "What is Trisomy 18?" to Google this is what you will find.....
"Trisomy 18, also known as Edwards Syndrome, is a severe genetic disorder associated with intellectual disability and abnormalities in many organs. Trisomy 18 was first described in 1960 and results from an additional copy of chromosome 18 (normal cells carry two copies of each chromosome; the term, "trisomy," refers to the presence of three of a given chromosome). Only about 10% of affected infants survive past one year of age, and half of affected infants do not live beyond the first week of life.
Trisomy 18 Facts
* Trisomy 18 (Edwards syndrome) results from the presence of an extra copy of chromosome 18.
* Trisomy 18 leads to severe intellectual and physical defects.
* The prognosis of trisomy 18 is poor. Half of those affected do not live beyond the first week of life and a low percentage of infants with this condition live beyond the first year.
* Common features of trisomy 18 include a low birth weight; a small jaw and mouth; an abnormally shaped, small head; overlapping fingers and clenched fists; and defects in the heart and other organs.
* Trisomy 18 occurs on average in 1 out of every 5,000 births.
* Most fetuses with trisomy 18 die in the prenatal period (prior to delivery).
* Girls are affected more commonly than boys."
BUT, do you know what google won't tell you about Trisomy 18? Google will never be able to tell you that no matter how many seconds, minutes, days, months, or miraculous years you have with your child, you will LOVE them. You will love them so much that it hurts.
Google won't tell you that the "physical defects" they described are actually the most beautiful features you've ever seen. Those features are what unites your baby with his or her Trisomy sisters and brothers, in heaven and earth.
Google won't tell you that although milestones may be delayed, you will cherish them so much more. You will appreciate every breath, every moment of eye contact, every loud cry, every smile, and every feeding that is accepted. You will learn how to love unconditionally.
Google won't tell you that your older children will be their protector. That they will be their second Mother. That witnessing their bond will be something that only God could've created; a love that most people don't know exists.
Google won't tell you that this journey isn't a burden, it's a gift. While we as a society are taught to discard those that are different, or less than perfect, you will KNOW that isn't what God wants you to do. You will feel the magic of this special being that was chosen for you.
Google won't tell you how much this baby will change your life, and how you will never be the same.
