Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Saturday, February 7, 2015

When Down syndrome trends...

Down syndrome was trending in social media this week.  It made me a bit nervous to open the first article;  I wasn’t sure what to expect. Typically when I see DS in the media, it is a feel good story that is intended to show us all how “not different” people with DS are (Driving a car, going to college, prom king/queen, playing with a dog) but often miss the mark, in my opinion.  But this story was different, and I could tell right away that it wouldn’t be leaving the headlines soon.

In case you missed it, the story centered around baby Leo and his recent birth diagnosis.  In the mother’s native, Armenia, common practice was to give parents the choice to leave their child behind at the hospital, where it might go on to an orphanage.  The father explained in his story that his wife decided not to keep the baby and he, instead, was going to take baby Leo home with him to his native New Zealand.  He reported that his wife asked for a divorce later that week and the two were no separated.   As I read the story, it seemed sad and wonderful all at the same time.  But something also didn’t sit right with me.  I am not sure why, but having the gofundme fundraiser immediately linked to the dad’s story just seemed…off.  I understand that he would have expenses and I surely know how much having a child (or four!) costs, but it just seemed off…

Today the mom’s side of the story was released to the public.  And in reading it, sadness is all that I felt.  It seemed genuine and honest and real.  In knowing what I know about how parents with a new diagnosis are treated, I really wasn’t that surprised at all.  But her story doesn't fully ring true, either.

Truthfully, I am terribly sorry for this family. And I hope that medical professionals across the world see how THEY play a great role in this story. Do I believe there may have been underlying issues with that couple to begin with? No doubt in my mind. Do I believe that if they had had a much better diagnosis conversation, we would never have heard their story? Absolutely.

This story should be something that every medical professional reads carefully.  In our world, in 2015, it is appalling to think that this is a common practice or standard of care anywhere.  I realize that in other countries, there are various beliefs held about disability, but it doesn't make it any less heart-wrenching. And it wasn't that long ago that here in the US, there was a common practice not unlike that in Armenia.  We do, however, know from our own history that allowing parents to parent children born with Down syndrome has made an incredible impact.  People with DS are making great gains and the life expectancy for someone with DS has increased dramatically in the past 20 years.  

And while this is something that many medical professionals will brush off and claim disconnected to the way things happen in their practice, their town or their state.  It is just UNTRUE.  And is exactly a key reason why we began DSDN.  Read some of the diagnosis stories in our book Unexpected and you will see what it was like for these families, in the US and around the world, to receive a new DS diagnosis in the past few years.  I think you will notice some haunting similarities to the headlining story. Sad, but true.

In meeting over 1000 moms with children with DS under 3, I have heard time and time again how common this diagnosis experience is.  In fact, we recently surveyed mom and found that of the 133 that replied, 58 had a prenatal diagnosis. Moms were presented a variety of options concerning the pregnancy. 70% of medical providers discussed continuing the pregnancy with the patient. Termination was as option in 59% of the conversations, while adoption was presented only 22% of the time. Nearly a quarter of moms (26%) reported that there were no options presented to them. And THAT is reality. 
Personal beliefs aside, this is a much bigger issue.  Parents need information and support.  They need resources and connections.  They need to know that someone wants them to understand what is going on and that someone is going to provide them information and tools to move forward.

For as many awful diagnosis stories as I’ve read, I’ve also heard stories about wonderful medical professionals that followed the guidelines for presenting a diagnosis.  Responding to  their patient’s needs and desires.  Responding with resources, information and connections. Those are the stories that I hope become the standard practice. Those are the medical professionals that practice with compassion and understanding.

What will it take for medical professionals to see just how much their approach in these situations impacts a family?  

If you have had a diagnosis (birth or prenatal) consider taking part in our Physician Feedback Program or talking with your doctor about how that conversation impacted you and your family.

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