World Down Syndrome Day 2015

World Down Syndrome Day.

March 21- 3/21-  a day picked to represent trisomy 21 or three of the 21st chromosomes (most of us have only 2- the third is what is responsible for what we know as Down Syndrome).  It’s a day of celebration for the Down Syndrome community- a group I tentatively belong to.  For me it’s a day of celebration, a day of sadness and anger, a day of reflection.

Last year I wrote a letter to those who were expecting a child with Down Syndrome.  I’ve written a lot throughout the year about Down Syndrome- what I see in the news, how it crosses my path on a daily basis, my memories… I recently reblogged this post by Sadie at Invincible Spring, which I wanted to share again today, of all days.

1) Prenatal screening can detect the risk of delivering a baby with Down syndrome.

2) Prenatal screening can detect the possibility of delivering a baby with Down syndrome.
They mean basically the same thing, but not. We welcome possibility, while we shy away from risk.

After reading her words, I have totally changed my practice.  In the babyloss community we are admittedly very sensitive to words and phrases, even if they are well intentioned.  “God needed another angel” is well meant, hoping to give us comfort- but those words sting us, even those in religious communities.  Those in the Down Syndrome community, can experience the same hurt.  And it starts early- before a diagnosis is even made.  We obstetrical providers are the first to address the idea of having a baby with Down Syndrome.  Sadie’s words has made me rethink how my simple words as a midwife portray Down Syndrome in our society.  I no longer use the word “risk” when discussing  genetic testing.  I now talk about the possibility of having a baby with Down Syndrome.  One little word, that connotes so much.  Especially for me.

I was open to the possibility of having a child with Down Syndrome.  I opted for testing even though based on my family history and my age, I was “low risk.”  But as I have counseled patients in the past, low risk doesn’t mean no risk.  I wanted to know my chances of having a baby with Down Syndrome, even though I didn’t think it would change my management- I thought I would continue a pregnancy with that information.  I have also learned, we don’t really know what we would do until actually faced with a certain situation.  When I was told, “it’s Down Syndrome,” I felt relief. The initial abnormal screening had me worried about all the life limiting conditions it connoted, but Down Syndrome was livable in my mind.  My baby could live!  I certainly cried my tears later over the loss of the dream child I thought I was having, but I also eventually embraced the idea- going to my state’s annual Down Syndrome conference, talking with parents of children with Down Syndrome, researching therapies and pediatricians who specialize in children with Down Syndrome.  I had a registry full of special baby wearers and toys made for children with Down Syndrome.  I accepted.  My baby began to feel extra special- yes, a wanted baby, but a wanted baby with Down Syndrome.  An estimated 92% of pregnancies diagnosed with Down Syndrome are terminated.  I was proud to be part of the minority, and also sad that I was part of the minority.  In some ways, I feel future pregnancies may never have that same specialness.  Don’t get me wrong, I hope for nothing but as healthy a baby as possible, but having a baby with the typical number of chromosomes seems almost easy.  Almost.

International Down Syndrome Day is also a little painful for me.  I see photos of smiling children on the news and flooding my facebook and blog feeds, their features of Down Syndrome evident in their faces and their stories of how happy and loved they are written underneath.  I so badly wish I could be in that club- that club I at first never wished I belonged to- the parenting a child with Down Syndrome club.  It’s a lovely community, full of support for people having both an easy and a hard time.  Raising a child with Down Syndrome is a challenge- no one can argue that.  But what child doesn’t have his/her challenges?  Learning your baby has Down Syndrome simply makes your baby’s challenges known and upfront.

At times I can be a little angry- it was the extra chromosome that stole my baby from me.  Mabel’s kidney defects are rare, but they are more common in babies with Down Syndrome.  I sometimes get angry that I was in that minority that said “yes,” that I would raise a child with Down Syndrome, while the overwhelming majority chooses not to.  But I was given a child that wouldn’t live, while others terminated a pregnancy of child that might have lived.

I still believe in a woman’s right to choose. I just simply wish that more people would choose yes, when it comes to Down Syndrome.  It is not an easy road- sometimes it can end in heartache, like with me- but I don’t regret taking the risk of loving my child with Down Syndrome.  I would carry another child with Down Syndrome, despite the risks of loss.  There are no guarantees in life, in love, in family- all we can do is hope.

***

In remembrance of our daughter Mabel, my husband is fundraising for Best Buddies, an organization that helps people with intellectual and developmental disabilities- including those with Down Syndrome.  On May 31 he is biking 100 miles across Cape Cod to raise money in her name for Best Buddies.  If you’re looking for a way to celebrate World Down Syndrome Day, consider donating by clicking here.

Mabel

 

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11 thoughts on “World Down Syndrome Day 2015

  1. I thought about Mabel yesterday.
    I am so sorry she isn’t with you. And there IS something especially unfair about the fact that she died even though you were in the minority of parents who chose to open their arms to a baby with Down syndrome.

  2. Even though my daughter Sinza had no Down Syndrome diagnosis, I can relate with the feeling of unfairness to the minority decision-taker. Her dad walked out upon hearing the news of the +ve pregnancy test, with advise to get myself an abortion. I chose to keep her, endured all the redicule that comes with being a single pregnant woman (its still considered taboo and shameful in my country- so most single moms opt for an (illegal) abortion). Then she suddenly died a few days shy of her due date. Reallyy???

    Best wishes to Mabel’s dad in his fundraiser!

    • yes! I have found I can relate to others who are in nontraditional situations too- some babyloss, others not. To go forward under the hardest of circumstances and Sinza was ripped away from you too! unbelievably unfair!

    • thank you for passing it on! The other term I’m trying to use is “life limiting condition” rather than “incompatible with life.” In this other community I sort of straddle in- one of those who chose to carry to term despite a possibly fatal diagnosis- this term apparently is more acceptable. Has similar effects on the people in the community and so I try to respect that wording too!

  3. First off, can I just say that Mabel is such a gorgeous baby. She looks incredibly cuddly in that picture and I am heartbroken that you aren’t going to be spending a lifetime cuddling her. I agree with typhane that as one of the few parents who made a courageous choice to embrace a baby with all the special possibilities that extra chromosome brings, it’s doubly unfair that you had that opportunity taken from you. I am so sorry.

    Also Meghan…I am blown away by your reflections on my post. I cannot tell you how rewarding it is to learn that from my own tiny corner of the internet, where all I’m really doing is stumbling along learning to cope like everyone else, some positive change may ripple outward. I can only say thank you, thank you, thank you. Your colleagues and patients – and the babyloss and Down syndrome communities – are so fortunate to have such a thoughtful, responsive caregiver (I use the term intentionally holistically) like you in their midst. You are doing one hell of a job continuing to parent Mabel. I am sure she is so proud of her mama.

    I really feel like the key to improving acceptance and inclusion is changing the discourse around the many negative assumptions we have surrounding trisomy 21; assumptions that just don’t hold up to lived experience. In your position you have a lot more opportunity to affect change than most (though you’ve also got me thinking about ways we might work on advocacy). Thanks again for sharing this, and for continuing to engage with a topic and a group of people that are also tied up with so much pain and sadness for you. As a fellow loss mom, WDSD is also always about those little people whose journeys were too short. Remembering Mabel with you. You and your husband are amazing.

    • Thank you! I am proud to say I had a meeting with my fellow midwives the other day and I brought it up to them too! It felt awkward to discuss, but I”m glad I did. I was even reading an article in my national midwifery journal that was discussing all the genetic testing options- triggered by some of the new tests available. Lots of use of the term “risk.” I’m tempted to write a letter to the editor addressing the term and the implication. I know that it is hard to write a scholarly article without using the term- and perhaps that’s not my point. Perhaps just so I could get the idea more out there.

      • Meghan, do you have an email where I could reach you? I am thinking of pursuing this from a dual advocacy/research perspective (my background is in social science research, and it is by no means impossible to produce a scholarly article in some disciplines while still avoiding the terminology – or at least pointing to its limitations). I would love to discuss it with you further, from your professional perspective. You could also reach me at the address listed on the right sidebar of my blog.

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