The List

Disclaimer: Save Down Syndrome is a not-for-profit and Bi-Partisan organization. While we do not take a stand on current political issues, we are against the genocide, discrimination and mistreatment of individuals with Down syndrome. - Save Down Syndrome staff


THIS POST IS NOT INTENDED FOR DEBATE. On the topic of abortion with the recent change in New York law, I have to take a minute to pause and think of how casually that word is thrown around in this day and age. I am not here to discuss what everyone should believe is right or wrong. However, I can speak of my own experience with the subject and what that word has recently meant to me.

On December 26th 2017, when we discovered that there was a 96% chance that Rowan had Down syndrome, the genetic counselor told us that whatever we wanted to do they would arrange. Like what do you mean? Like terminate her life? You mean terminate that little girl we saw on the screen moving around, with 10 fingers and 10 toes, and a little fluttering heart... that ONE? Yes. It wasn't that direct but you get the point... They were just doing their job. A job that no doubt is difficult when delivering news that can be upsetting.


Additionally, they slid over "THE LIST". The list with all the things that may occur with Down syndrome - heart defects, vision problems, hearing loss, infections, hypothyroidism, blood disorders, and hypotonia (poor muscle tone) just to name a few. Sounds scary right? My eyes well up with tears just trying to process that my little baby girl might not be okay. No parent wants their child to suffer. Ever. I don't blame them for attempting to provide me with as much information as possible.

They made sure we knew we had options if we chose not to move forward with our pregnancy. Fortunately for us the decision was never a question mark. I do feel fortunate for that because I know that many couples would struggle with that decision. As I scoured the internet for the accuracy of these prenatal tests, I was amazed at how many referred to "losing" a baby to Trisomy 21 and they would place an angel emoji along with date for the loss of that child. Upon further review, I would read where in the post they had in fact terminated that pregnancy. I scratched my head.. was I missing something?

Down syndrome is not life threatening. There can be medical complications from Down syndrome and those complications as with any health issue can be a concern, however Down syndrome is in fact a trisomy that is "COMPATIBLE WITH LIFE". Did these families make the decision to terminate their child because of "the list" they were shown? Or was it the fact that it would be hard? Was it the fact that their child would be "different"? Or have "special needs"? When it comes to having a child, parenthood is just plain OL' HARD. Now you must add these extra things?

My only question to them would be... would you terminate a child of yours simply because of the things on the list - IF the child DID NOT have Down syndrome. Probably not. Most couples wouldn't terminate their child because they "may" have health issues because that just sounds awful. This is such a huge decision that you must make blindly at 12 weeks when things are still forming.

This post is not about PRO-LIFE or PRO-CHOICE, it's about perspective. Down syndrome is not something that needs to be eradicated. It is a gift and they belong here just like any other individual. They are not a mistake; They have rights, opportunities, dreams, goals and friends. They love. They respect. They deserve to be loved and respected in return... just like any other individual.

I have been advocating for my children (all 5 of them) since 2003. As mothers, that is what WE DO. I am not afraid to go on this journey with Evan and our family. I embrace it and am so flipping EXCITED for what the future holds not only for Rowan but for us as well. I AM BEYOND READY to take a stand for Rowan and all her friends just like her. I promise you if you met little Row Row you would totally get my obvious obsession.

BOTTOM LINE: The medical community is quick to tell you all that can go WRONG when you have a child with Down syndrome. They are quick to say "I am sorry". Although, I do understand that "Congratulations" in that moment might be awkward as well. However, I do believe that all expecting parents should also know everything that can GO RIGHT before they make any decision. There should be a list of all the AMAZING things going on in the DS world these days! Information should be all encompassing.

And as far as FB goes, if you ever, ever, ever, ever have a friend who is feeling devastated by the news of a possible diagnosis of Down Syndrome ... Tell them to first breathe, take a few days to process it, and then CALL ME. I will try to contain my excitement for the journey that they have been chosen for.. xoxo

Love, Rowan's Mom and BIGGEST advocate


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