Homies with Extra Chromies: Celebrating Trisomy Awareness

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.

Homies with Extra Chromies: Celebrating Trisomy Awareness

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.

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