March is Trisomy Awareness month.
On this 3rd month of the year, we celebrate everyone who has a 3rd chromosome in one of their usual 23 pairs; or Trisomy. What makes these people so special they get their own awareness month? Well, for starters, these babies were chosen as the recipients of a little extra love in their DNA. Instead of the customary 46 chromosomes, their genetic makeup contains 47.
Depending on where and how this extra little chromosome falls, determines the classification of the Trisomy. It is named for its location; Trisomy 21, Trisomy 18, Trisomy 13…based on which of the 23 pairs of chromosomes has the extra copy. If you opt for prenatal screening at the beginning of your pregnancy or you have any “markers” at your 20 week ultrasound, genetic testing can tell you where this extra chromosome is located and how it makes your baby so unique.
Science. Mind-blowing, I know.
Many have heard of Trisomy 21 before, as having three copies of chromosome 21 is more commonly referred to as Down Syndrome. It affects nearly 1 in every 675 babies. Special shout-out to the newest Gerber baby, Lucas, for rocking Trisomy 21. However, Trisomy 18 (Edwards Syndrome) is far less known, affecting only 1 in 5,000 babies.
This month is near and dear to my heart because my son, Will, is my homie with an extra chromie.
Will was born with complete Trisomy 13, one of the rarest of Trisomies, affecting only 18-20 babies born throughout the world each day. You can read more of his story here. When we first received Will’s diagnosis, I felt like there were very few resources to help us get to know him. Much like Googling symptoms for your common cold [and a few clicks later WebMD has your diagnosis as probable death]…well, that’s how it seemed for us, too. All of the research we could find was the most severe, shocking, and downright scary information out there.
Thanks for the help, Internet.
It is true that Trisomy 13 can create complications that lead to a short life expectancy. In Will’s case, his Trisomy caused a congenital heart defect, which was inoperable on his tiny body. But, I truly believe that he spread more light and love in this world in his short 8 weeks than many spread in a lifetime. So, this month I feel it is my job to shine a little light on Trisomy and bring awareness to these beautiful children (many of whom have rocked their Trisomy into adulthood).
Trisomy is not something to be feared; it is something to be understood.
It is not a death sentence; it is a welcoming to live your life more completely. An opportunity to prioritize what is really important in this world and keep it at the forefront of your mind on a daily basis.
So, what have I learned from my Tri 13 baby?
- Trisomy families need love like soccer moms need minivans. A friendly, non-judgmental conversation might be all it takes to make the road seem less lonely.
- Any questions that start from the heart are worth asking. An interested friend is better than an impartial friend.
- It’s okay to believe in best-case scenarios. Even when people only seem to share the worst-case scenarios.
- You can analyze every calorie, vitamin, exercise routine…but, you did nothing to “cause” this chromosomal anomaly. It’s chance happening. Guilt gets you nowhere.
- Small victories are worth celebrating. Your baby danced his way into week 25, week 30, to his due date, to his first poopy diaper. Celebration is key.
- Trisomy can create unique features in appearance. People may stare, make rude comments, or talk about your child. Your reaction dictates how comfortable people will be with “different.” If you proudly embrace your child’s’ uniqueness, so will the people that will matter in her life.
As mamas, we know how difficult it can be to welcome each unique child into this world. As Trisomy mamas, we know how difficult it can be to welcome the world to a unique child. People are quick to judge what they don’t know. If you’re not part of the Trisomy world, you don’t know how amazing it can be unless you ask.
I’m an optimist, so I don’t mean to sugar-coat the Trisomy life. It has its share of struggles. It is a complete and utter roller-coaster. It will test you to the max and then some. However, I refuse to believe the literature that says it’s not a worthwhile path. The roads less traveled are always worth it in my mind, because that is where the greatest of adventures await. It is where the richest lessons are learned and the true meaning of life unfolds.
Know any Trisomy mamas?
If you are just starting out your Trisomy journey, may I suggest directing your reading HERE and HERE. If you are on Twitter; @trisomy_soft is an encouraging follow as well (they also have a Facebook group). Above all, reach out to mamas who are on the same path as you. Finding a solid group that can answer your questions will not only save you time, it will fill you with more reliable (first-hand) information.
Stay strong, mamas! You were entrusted with God’s most precious people. That extra chromosome is His gift to you and your child.
May we continue to embrace the uniqueness of each individual child and not be afraid to learn about and from each other.
Make sure you never miss out on a parenting or community-related blog post: sign up to receive CRMB posts in your inbox. While you’re at it, join our VIP List to ensure you’re one of the first to know about upcoming Cedar Rapids Moms Blog events and promotions!!
Thank you! This was so beautiful! A great tribute. Thanks for educating and inspiring me.
Thanks for taking the time to read and comment!
You are such an incredible and inspiring person. I wish our paths crossed more often. Your writing is so beautiful and your perspective is so powerful. The world needs more people like you!
Thanks, Val! I love seeing those beautiful girls of yours… hopefully we cross paths again soon!
I never met Will but as you wrote, he did create so much joy and love for everyone, more than you will ever know. Thank you for sharing his life with us.
Thank you for sharing this information with our Cedar Rapids world. I love the “homies with extra chromies” tagline!!! Our homie with an extra chromie was born with Trisomy 13 in April 2017. She is an inspiration and an example of perseverance. So, basically, I cried when I read your post. Because it’s great info. But also so relatable.
Your post is full of “someone who gets it”. Although we have not lost our daughter, and she is, hopefully, soon to be a long-term survivor by reaching her one year birthday, the emotional rollercoaster of the pregnancy, diagnosis, birth, and the unknown that comes after all of that is all something I think most of us Trisomy Mamas can relate too.
Even if all of that becomes our “past”, regardless if our babies are still here with us or gone, the experience has created an acute awareness of life in us that shapes the way we now function. And although it’s in our “past” we still need to reflect with our loved ones from time to time on all of those experiences we went through. Sometimes we still need to talk about it—- the joy, the trauma, the fear, the guilt, the love. It never really goes away….. our perspective and our processing of it changes with time. But it’s always part of who we are as a core family and as a woman who mothered a child with Trisomy.
I don’t think many people realize there are soooo many different ways that our babies chromosomes can copy. This makes our babies so uniquely different even within the pool of Trisomy 13. Many family and friends are quick to point out other T13 baby stories as a comparison to our own. While inspiring or heartbreaking, sometimes our loved ones have to remember each of our babies have their own unique paths, challenges and triumphs, just as our other children do.
I’m so sorry Will didn’t get to spend more time with you. A mother should never have to bury a child. I can relate to preparing for it. I can not imagine having to do it.
How lucky Will was to hang out with you all. Feel the touch of the ones who love him. What a gift for Will. What a gift to each of you. Blessings to you and your family.
Thanks again for your post.