The Story of... our Prenatal Diagnosis of Down syndrome

It's truly all in delivery. Any news, really. Good news. Bad news. All news. And...HOW the news is delivered seems to have a significant impact on how you view the actual news you are given. 

I had a friend explain the "shit sandwich" to me once. I thought it was GENIUS! She said, "you take a positive part of the news, add the "shit" - or the not so positive part, and then sandwich THAT with as much of a "positive" statement as possible.  I remember thinking, "wow. How is this not a part of everyone's training?!" Especially medical professionals.

I'm aware that sometimes the news just can't be sugar-coated, made easier, or beautified. It's harsh. It's cold. And it's not what you want to hear. But maybe, just maybe, acknowledging the humanness of the person who is receiving the information might lend to remembering how much of an impact the HOW of the WHAT you are delivering as a practioner might make or break that human and their experience.

The Story...

Let me share my story. The most significant news delivery story I have ever gotten to tell in my life.

On the chilly spring morning of my daughter's 19-week anatomy scan, my friend at work cheerfully said, "aren't you excited? You get to see your baby today!?" I was. But I couldn't hide my worry. Having worked in midwifery clinic and worked with pregnant women for as long as I had, I held pregnancy like a precious golden egg in my hands that did not want to shatter. I was so nervous - I had an intuition that we were about to receive some big news.

Fast-forward to the furious photo-taking of the Ultrasound Tech and my own furious head going back and forth between the blurry images she was assuring me were my baby and her facial expressions. Wondering what she was taking photos of so intently. She must have been really good at poker because I didn't once see anything in her expression that would have led me to believe something was abnormal. Then she took her last picture and stopped, smiled and left my hubby and I in the small room to wait for the perinatologist.

And for what seemed like the longest time, we waited. We kept looking at the photos of our daughter. Smiling at each other as we acknowledged the fact that her brother knew about her before that affirmation of the photo on that tiny screen (his hand on my belly at 5weeks indicated he knew she'd be a girl.) Wondering what we should name her. And wondering, perhaps on a deeper level, what was taking our doctor so long.

Then the doctor joined us and began slowly looking over the various images on her screen. She had a very positive, sweet and confident air about her. Her presence automatically put us at ease - something very unexpected for a doctor who worked with high risk pregnancies and babies.

So when she started explaining what she found in the ultrasound, we already trusted her. We needed explain, to hold the space for our reaction, to be compassionate. And she did all those things, and more. There isn't a way to prepare yourself for news that changes your very being and your life. It hits you like one of those big logs in a cartoon. And she knew that. So she proceeded with care and a gentleness that felt protective, cautious and very loving.

"So, that issue you came in to check out is no longer and issue. It has resolved. However, based on the ultrasound results, I believe that your baby has the high likelihood of having Trisomy 21, also known as Down Syndrome."

My heart jumped. What just happened? "Wait... what?" I managed to stutter.

"This sheet here has all the markers for Down syndrome." She held out a check off list of all sorts of medical/physical abnormalities. "I've gone through them all and while she does not have all of them, she has 2 hard markers. There's a strong possibility that she has Down syndrome."

She remained gentle and compassionate.

Wait. One minute she's just a baby girl. Now....she's a girl that likely has Down syndrome? "What are the chances? Percentages?! I need to know more."

Without hesitation, she agreed to go find out exactly what those percentages were, which also gave us time to process. And time for me to tell my husband, "I'm sorry. It's my fault." Time for disbelief and worry to take hold.

As she reentered the room a few minutes later, she smiled gently. "Based on your age and the markers, your daughter has a 1 in 7 chance of having Down Syndrome. Would you like to do the blood test or amniocentesis to find out for sure?"

"Please take your time with this."

Our reply was simply, "Yes. Absolutely. The blood test. But it won't change the course of our pregnancy. We still have a lot of questions, but we want our baby no matter what."

Her response and smile to that particular statement remains the turning point in my memory for how I viewed my pregnancy and baby AND what I remembered on the darker of days when I wondered why my daughter chose me as her mother and how I was going to raise a child with special needs.

She simply said, "She's lucky to have you. And when you're ready, I'd love to introduce you to a mother who has a daughter who has Down syndrome. She's so beautiful. And I just love having her come visit - it's the highlight of my day."

Even though we left stunned, confused, curious and still in love with our daughter, we did not leave feeling hopeless.

The week that followed the blood test, as we waited for the results, I was both candid about the possibility she would have Down syndrome or held the cards close, depending on who I was talking with. My midwives were some of the most amazing listeners. One assured me that I could still try for a Vaginal Birth After Cesarean (VBAC). I remain SO grateful that in a time of huge changes, she normalized birth for me again.

Another shared her story about her daughter having an unexpected cleft palate and what that was like for her. And the Head Midwife sat with my husband and I as we processed the results on that 7th day. In a way only a midwife can, she held the space for us to process. She listened. She validated. And when we stated that we were continuing with our pregnancy, she simply said, "Okay." And proceeded to write in our chart, "Rebecca and Joel are preparing to meet their baby girl with Down syndrome."

I never heard, "I'm sorry" or "Are you sure?" There was no further discussion about "keeping" our baby...with any of our providers.

I know that this isn't the story that all my friends with babies like mine tell of their experience. And I sit here, over two years later, grateful that my daughter picked me and that I was lucky enough to have such supportive, positive care providers. And it all feels divinely guided.

I know not all news is easy to deliver. But if we truly see ourselves as one....if we see ourselves in others...then we can deliver good, bad, ugly, unexpected news on a human level...with compassion, love, understanding and support. It can be done. I believe my story is proof of that.


March 21st 2017 is World Down Syndrome Day. Hug someone with Down syndrome - and their parents!