Trisomy Awareness Month

Trisomy 13-Defying the Odds at 8 Weeks    

So God created mankind in his own image, in the image of God he created them; male and female he created them.

-Genesis 1:27

 

Today our daughter Hayden is 8 weeks old.  Although that may not be a huge feat in everyone's eyes, to those that know our story it is a true miracle. Hayden still continues to defy the unfair odds of Trisomy 13 that have been stacked against her since before birth but we are blessed each and everyday to be on this amazing journey with her.

This month is Trisomy Awareness Month and because there is no proven cause or genetic predisposition for both trisomy 18 and 13, awareness ensures that all families can provide support and sympathy to those who are affected.  Trisomy refers to an extra set of chromosomes present in every cell of the body. It is a disorder of the chromosomes and genetic makeup in which infants have 47 instead of the usual 46 chromosomes. Trisomy can occur in any chromosome and the most common type is Trisomy 21 (Down Syndrome), Trisomy 18 (Edwards Syndrome) and  what Hayden has, which is Trisomy 13 (Patau Syndrome).

Infants born with Trisomy 13 are born with different developmental "abnormalities" or "malformations" and physical anomalies. 80% of infants with Trisomy 13 have a congenital heart defect with many having breathing difficulties, apnea and hearing problems, 60% have a cleft palate or lip and Holoprosencephaly or failure of the brain to divide properly, 30% have kidney defects, and 10% an omphalocele. These are just a few predispositions infants with Trisomy face and all of which Hayden has and continues to battle each and everyday.

Phrases like she is abnormal,  incompatible with life, or has a 10% chance of survival to reach one year of age have lost their sting.  Words that should describe Trisomy children should be unique, perfectly imperfect, special, resilient, and compatible with life. Individually. although we all have our obstacles, having an extra copy of a chromosome  makes each and every Trisomy child unique and that much more special.

I believe that we were all created in his own image and that we all have a unique footprint.  I am constantly aware of all of the negativity that surrounds us and some days it does get to me. Although, it is A LOT harder than I ever thought to be a Trisomy Parent, I can never ask the questions why me? why her? why us? Because our journey and Hayden's is not for me to understand but for me to accept and trust.  Everyone has a unique journey but it is the path that God has created for you.

All I ever wanted to do with this blog was to share our journey and spread awareness.  I never knew about Trisomy until Hayden was diagnosed.  Now as a mother and fellow Trisomy Parent it is my priority to spread awareness.   We need to open our eyes and get comfortable with difference. So this month open your eyes to those in need, to those that are unique, and be thankful for what you are and grateful for what you have been blessed with on your own personal journey.