Trisomy Awareness Month

Every March I have the privilege of sharing about something that is near and dear to my heart. Every March I also get to spend more time talking about my son. I talk about him other times throughout the year, of course. But I don’t get to talk about him as much as I do my other children. I don’t get to give updates on him or share what’s happening. My son passed away shortly after birth. There are no updates. No pictures of him growing up to share. No firsts of his that I get to share with those in our lives. 

So every March, during Trisomy Awareness Month, I take time to share about my son. I take time to share our story and to encourage others who may have walked a similar path of hard, beautiful, loss, and pain. 

That’s how I spend a good bit of my time — meeting women who have lost a baby, either through miscarriage, stillbirth, or infant loss. I run an organization called Project Gabriel. It’s a place for women to meet others who have gone through such a large loss — who have lost a part of themselves, a child. It’s amazing to meet other women who “get it.”

So, during this month those of us who have lost our babies, especially to a trisomy, talk about it a little more. So what is a trisomy? A trisomy is when a person has three copies of a chromosome instead of the typical two. There are different types of trisomies, such as Trisomy 21, also known as Down Syndrome. Other trisomies include Trisomy 18 and 13; however, they are fatal chromosomal syndromes. My son had Trisomy 18, meaning that he had three copies of the 18th chromosome. He passed away shortly after he was born. You can read more about him and our story here on this post and then on my blog. 

Throughout the month, there are particular days significant to each trisomy. For example, March 18th is Trisomy 18 Awareness Day. The date 3/18 is significant because Trisomy 18 means there are three of the 18th chromosome. You may be wondering why these awareness days or why Trisomy Awareness Month exists. I had never heard of T18 before my son was diagnosed with it. But it, along with many other genetic conditions, affects many children born each year. It impacts many women who give birth to babies who will not see their 1st birthday. There are so many beautiful people in our lives with Trisomy 21 (Down Syndrome). We should celebrate these lives — all of them — give thanks for them. Ask more questions. Look into research on all of these syndromes. And love on someone who has been personally impacted by a trisomy.

Read below for some statistics.

T18 happens in 1 out of every 6000 live births and in 1 out of every 2500 pregnancies. It is the second most common trisomy.

Down Syndrome, or Trisomy 21, is the most common trisomy. 

In Trisomy 18, 95% of babies do not survive the pregnancy. Of those who do, 50% are stillborn, with boys having a higher stillborn rate than girls. Most babies who survive birth, pass away within the first month of life. Fewer than 10% survive to their first birthday.