Trisomy Awareness Month Recap
March 31, 2023
As Trisomy Awareness Month draws to a close, I wanted to take this opportunity to reiterate the points we made in our very first post this month on Trisomy Awareness. We addressed five reasons to remember Trisomy Awareness Month, and in this blog post, we will dive into these points in greater detail.
Our first point is that trisomy happens and is not uncommon. Whether or not a family will experience full trisomy, mosaic trisomy, or partial trisomy in their own family, they will likely meet a child with trisomy in the community. If this is such a common diagnosis, we need to be aware of it and realize that the children and adults with this condition are a valuable part of our society.
While we know that these diagnoses are common, at times parents who receive this diagnosis are told to give up hope. We instead encourage parents who have received a trisomy diagnosis to look for the stories of hope. Parents of Trisomy 21 children often get to spend many beautiful years with their children and watch their children grow into adults. As I have personally done research this month on trisomy, I was amazed at the stories I found of children with Trisomy 9, 13, and 18 who were thriving. A shortened span of life does not change the value of the time families enjoy with their child.
At Verity’s Village, we personally know parents who are so glad that they have had the opportunity to spend every moment with their baby with a trisomy diagnosis. The love parents develop for their baby in the womb does not just turn off when a diagnosis is received. At Verity’s Village, we support the families who have received a life-limiting diagnosis in utero. In addition to connecting parents with a community of other parents who are also dealing with a diagnosis, we send our parents a care package to aid them on their journey. Our heart is to nurture and encourage their hearts while they hold onto hope.
Parents facing a trisomy diagnosis need a community! They need support as they choose to continue their pregnancy feeling like they are swimming upstream against the current. As they push forward requesting life saving procedures for their baby, they need encouragement from their families and friends. While this should be easy, many times it is not. Our society does not yet see the value in spending time, effort, and money on babies they see as “not compatible with life.” We insist that our babies are compatible with life as any baby born alive deserves life saving support. A diagnosis does not negate humanity.
Trisomy Awareness Month is so important for building new parent’s understanding of trisomy. When a parent has been exposed to trisomy before receiving a diagnosis, they are more likely to know the hope these children have. In Karen Gaffney’s Ted Talk regarding Trisomy 21 and having an extra chromosome, she mentioned an elementary teacher who was blessed to have Karen as a student. Later when this teacher became pregnant and received a Trisomy 21 (Down syndrome) diagnosis, she knew the beautiful potential of the child she carried in her womb. Her relationship with Karen Gaffney led to her immediate acceptance of this baby as valuable, compatible with life, and compatible with love.
Every single time we speak out about trisomy, we raise the level of awareness about the babies, children, and adults who would say, “I have one more chromosome than you. So what?” If you have a child with trisomy, have had a child with trisomy, know a child with trisomy, or have not yet encountered a chid with trisomy, know that your discussion of trisomy changes lives. Your posts, your conversations, your letters to congress, your letters to the editor, whatever way you reach out to raise awareness makes a difference in this world. Keep raising awareness. Not just in March for Trisomy Awareness Month, but in April, May, and throughout the year.
How to join our mission
Would you like to join Verity’s Village’s mission? We have three ways you can be a part of what we are doing.
➊ If you are a parent who has received a life limiting prenatal diagnosis for your baby, join our community group to connect with other parents who are also facing a diagnosis → https://www.facebook.com/groups/diagnosistodelivery
➋ If you want to find out more about our mission and what we do here at Verity’s Village, sign up for our e-mail list → https://veritysvillage.com/join-the-village/
➌ If you love what you see and want to partner with Verity’s Village to support families who have received a diagnosis as well as our future projects to educate the community on the value of these precious lives, become a monthly donor here → https://donate.veritysvillage.com/donate?amount=50&term=monthly
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