Prenatal Down syndrome diagnosis

June 26, 2012

We didn’t know Kate had Down syndrome until she was born.

Knowing that it wouldn’t make any difference, we didn’t choose to have any prenatal testing — and so, her diagnosis was a surprise to us on her birth day. People have asked me since if I would have preferred to know beforehand and I still say “no.” I like to deal with the whole reality of things — not pieces of it — and meeting her added perspective to the situation instead of this ambiguous, surreal “diagnosis” circling in our heads for months. Suddenly, Kate was here. And suddenly, her diagnosis was something we had to deal with.

And then one day soon, it wasn’t something we dealt with — it was something we celebrated.

But that one day – that celebration day – when the sky opened and the gift of perspective fell upon us – that can’t be conveyed in a sterile doctor’s office during a prenatal diagnosis.

And, truthfully, most doctors don’t even know where to begin — even with the best of intentions. And so they shift their feet, they stick to the text book, they “share the options.” It’s not their fault. They, too, are operating from the same place we were on the day Kate was born — and we focused on the facts. But the “facts” are not where the magic lies.

Because if you look at the facts:

79% of parents report their outlook on life is more positive because of their child with Down syndrome.

99% of adults with Down syndrome report they are happy with their lives, 97% like who they are, and 96% like how they look.

And yet, 9 out of 10 babies who are diagnosed with a prenatal Down syndrome diagnosis are terminated. That’s 90%.

And for the scared, hurting parents who just received an overwhelming diagnosis — they’re not processing the facts that if quality of life is the only consideration here, this baby will make everything in their life a whole lot better.

But this post isn’t about prenatal testing (or the ongoing political debate regarding new, earlier tests).

And really, it’s not even about abortion — though, you can’t help but pause at those statistics.

It’s more about perspective.

My OBGYN asked me the other day if he could give his patients my contact information if they received a positive prenatal diagnosis. He was aware that many of his patients needed more than a well-meaning, “Most families find this to be a great blessing,” — in fact, a favorite patient of his had just recently terminated her pregnancy based on the diagnosis. I said, “Of course.” (Of course.)

But then I started thinking about what I would say to someone in that position. Someone who may have a very different world view than me, a different value system, a different support system. Someone who wasn’t ready to hear all the details and meet all the high-functioning, charming and successful adults with Down syndrome (I know I wasn’t in those first few days).

And then, aha, I thought.

I wouldn’t want to say much at all.

I would just want them to meet her.

Because that’s where the magic lies.

After all, the facts will always be there when you need them. The happiness quotient for the whole family. The limitless possibilities for what you will no longer see as a disability. The community. The gift of perspective. The secret to life. I can tell you all those things — doctors can tell you some of those things.

But what a prenatal diagnosis cannot tell you is what it will feel like to look into those eyes and know: you’re one of the lucky ones.

***

If you or someone you know has received a prenatal Down syndrome diagnosis, here are some other websites I suggest visiting:

idscforlife.org

kellehampton.com

{ 14 comments }

Meg June 26, 2012 at 1:00 pm

Thank you so much for this, and all of your wonderful posts! I have been reading your blog for a few months now, right around the time my daughter’s quad screen blood work gave her a “risk” (as they call it) of a 1 in 43 chance in having down syndrome. We chose not to even have an amniocentesis for confirmation because as you said, it would not have made a difference…we loved her and already valued her life just as God created her. It did create a whirlwind of specialists, numerous ultrasounds, plenty of wondering, and stress! As I did my research along the way, I was horrified with the statistics I read ( 90%?!? I was sick when reading that, just sick) and my husband was even more horrified by the “options” discussion at our awkward doctors appointment. At this point, my husband and I do not think we will do the screening with the next pregnancy.

My concerns were always the potential health problems attached to the diagnosis and I was sure that in the moments of her arrival, I would want to inspect her every part. Turns out, in the moment she arrived, we didn’t even stop and think about all of our months of worries. I felt the same joy and love that I felt when my first daughter was born- she was here, she was as she was meant to be, and I just saw her as herself. She was born with a heart defect ( but is quite healthy!) but was not born with down syndrome. Thank you for your beautiful words!

Lauren June 26, 2012 at 2:40 pm

Meg, thank you for reading. And God bless your beautiful girl — I’m so glad to hear she is doing well! :)

Cathi D June 26, 2012 at 2:43 pm

Thanks so much for writing this. God Bless you for loving your daughter. I am always amazed by the need to know everything all the time. I don’t believe humans have the ability to know everything nor should we. It was suggested to a friend of mine that with the numbers she had in pre-natal test, he’d terminate. Can you imagine the grief, horror and stress these new parents we put under at that very moment. Today that child is 9 yrs old, beautiful and wonderfully healthy. I suggested to my friend that every year on his birthday I would pay a visit to the doctor and say “Wish my son (that you would have terminated) a very Happy Birthday” and walk out. What do you say to the mother who’s baby is born healthy but finds their child has Luekima at two years old. Was their screening for that? Wouldn’t you rather have been spared that? Life is a gift and each day is precious.

Lauren June 26, 2012 at 4:03 pm

Cathi, unfortunately what happened to your friend is not that uncommon. Thank you for your beautiful comment.

Ari June 26, 2012 at 4:30 pm

Great post Lauren! What a blessing Kate is!

annie June 26, 2012 at 8:27 pm

Such a touching testimony and such a depressing statistic of lives lost. I’ve never had to face this circumstance but I have potential grandchildren in my future. There will be lots of unconditional love to go around if this particular challenge (or any other for that matter) ever visits us.

Zoe June 26, 2012 at 9:30 pm

Oh, Lauren, I want to meet Kate!!! Seriously. You and I were pregnant side by side, and she arrived only days before my Max. I cried and cried for you in those days. (I didn’t yet realize it was such a positive thing.) Through Facebook and this blog, I feel like I know her, but I’ve yet to meet her. And I so want to.

Lauren June 28, 2012 at 9:37 pm

Zoe… we need a play date!!

Elsha June 28, 2012 at 9:16 pm

This is beautiful.

This is my first time reading your blog, but it turns out we have a mutual friend. Catryn (who was a sorority sister of mine in college) directed me to this post because she said it made her think of me. Our third child, Daniel, was born in March and has Down syndrome. We also had no idea before birth (and I wrote about why I was glad about that) and we’re also finding out what a blessing he is.

Anyway, I love hearing stories from people who are farther along in their journey than we are, so I’ll definitely be reading!

Kathy June 30, 2012 at 9:18 am

Wow!

Joe July 3, 2012 at 2:50 pm

I linked over to your post from Fallible Blogma today. Your writing blew me away. I had just finished discussing finances with my wife. Not so rosy…things are tight, like millions of others are feeling the pinch. Your post and your perspective erased my anxiety. It feels like I’ve seen Christ alive in our world today. Thank you and may His peace be yours.

Allison Howell July 12, 2012 at 10:29 am

“The secret to life” ~ yes! We’ve found that in raising kids with cystic fibrosis, which comes with a 1:4 chance with each pregnancy.

And what a pretty girl you’ve got!

Jennifer October 15, 2012 at 5:23 pm

I had no idea you had a child with Down Sydrome. I can’t remember how I stumbled upon your blog, or how long I’ve been connected to you on FB. In March we found out our daughter was diagnosed with Trisomy 18. We hadn’t done any early testing, there were just so many concerns during the 20 week ultrasound that we decided to do an amnio. Initially the doctors gut instinct was that we would have a baby girl with Down Syndrome. However, we weren’t shocked to get the news about T18. (Well, not shocked might not be the best way to describe the situation).
I absolutely LOVE the statics that you shared. Our diagnosis was “incompatible with life”. But that isn’t a good description. Because she was part of our life during the pregnancy, and we got to meet her and love on her for 25 precious hours. Of course saying goodbye is heartbreaking. But we would have had to say goodbye no matter what… choosing to let our daughter live out the life that was meant for her gave us the opportunity to experience lots of love and joy with her. Not just heartbreak.
I’m so glad you are one of the “lucky ones”, that your daughter was given the chance to shine during her life and put your family in the 79% who feel more positive about life.

Kristin May 19, 2013 at 11:39 pm

Lauren,
My husband and I just had a baby with Down syndrome 2 months ago and you said it perfectly, we are the lucky ones. I had the prenatal testing done and found out at 13 weeks that we were positive and the remainder of the pregnancy was hard but the exact second she came out the worry and panic was gone. She is the most precious and amazing little girl and I couldn’t imagine her any other way. Thank you for your words, they are so true and so beautiful. I look forward to following your blog :)
Kristin

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