One of the Lucky Few
By Jennie Dickens,
Down syndrome advocate
“I don’t care whether it’s a boy or girl, as long as the baby is healthy.”
Most pregnant women utter those words (even if, deep down, they actually do care if it’s a boy or a girl). And most of the time, the baby is healthy.
But what if it’s not?
My pregnancy history: infertility (including surgery), healthy baby boy #1, miscarriage of twin boys, infertility round 2, (un)healthy baby boy #2, and super-surprise healthy baby boy #3. This post is about (un)healthy baby boy #2. Micah.
Most of the time, you go into the 20-week ultrasound (or earlier, if you’re “high risk”) looking for 10 fingers, 10 toes, a healthy heart, and a clear shot “down there” that tells you the answer to the gender question (or not, if you love surprises). If you’re new to the process, you don’t think much of it when the tech makes an off-handed comment about the doctor coming in next.
A “double bubble” is seen on an ultrasound when fluid the baby swallows doesn’t go through the digestive tract. The stomach is one of the bubbles. The duodenum (first part of the small intestine) is the second bubble. The most common diagnosis is duodenal atresia (DA). And that was the diagnosis we received for our little guy. It occurs once in every 6,000 pregnancies. Surgery is required shortly after birth. Now here’s the kicker: 30% of babies with DA have an extra 21st chromosome (aka Down syndrome). That makes DA a “hard marker” for Down syndrome.
The only way to know with 99.9% certainty one way or the other is to have an amniocentesis. We opted to go that route because if our baby did have Down syndrome, we would be faced with not only a newborn surgery, but also how to be prepared for his life beyond the surgery.
Ten days later, we got the call.
“Mrs. Dickens, I have the results of your amniocentesis and I have bad news for you.”
[Pause. Oh, my goodness. Does he have Trisomy 18? Or Trisomy 13? Because both of those are fatal. And that would be really bad news…the worst kind of news…]
“Your baby has Down syndrome. Do you have any questions?”
[wind knocked out of me] “Um, no… Thanks for calling…?”
Every woman who receives that call must process that information in HER. OWN. WAY. No one is prepared for it. And no one knows how they will respond until they’re in it. There is no script.
[Side note: before you do prenatal testing, PLEASE have the conversation with your spouse about why you’re doing the testing and have a good idea of what you will do with the information when you receive it. Emotions will be running wild if you get “bad news”, and you’ll need truth to fall back on.]
You probably cry. You scream. You hug your spouse. You feel guilty because you’re crying about something that is a part of your child.
And your next step is to tell your family and your friends.
Your girlfriends.
The ones who have your back, no matter what.
Have you ever gotten a call like that from a friend, and you didn’t know what to say?
That’s okay. I didn’t know, either. And your words should depend on your relationship with this friend. What can you say? In my opinion, there’s one response that a girlfriend can give that will have the best reception:
“What do you need?”
“Dear children, let us not love with words or tongue, but with actions and in truth.” 1 John 3:18
Then, take action for your friend. If you’re on the phone with her and live close by, get in your car and go to her (unless she’s not ready). If you’re out of town, it’s a little more challenging. But think of something you could DO to show her you’re supporting her. Need ideas? You know your friend best. Maybe a journal, or a framed song lyric for the baby’s room. But don’t look for something unique to Down syndrome as a baby gift. She’s having a baby, not a diagnosis. And that baby will be more alike than different.
One day, after she’s held her beautiful baby in her arms and has seen the light of God shining in his or her smile, she will know the JOY this special child brings. I know, because I do. When she’s learned how to navigate this new world of raising a child with Down syndrome, she’ll know what moms like me know:
We’re one of the lucky few. I wouldn’t trade Micah for the world.
She will eventually get to a point of being able to look back on that time when she first learned the news that rocked her world, and she’ll remember that you were there, and that you lifted her up. That’s what God and My Girlfriends do.
About Jennie Dickens
Jennie’s reSOURCEs
IF YOU ARE EXPECTING OR HAVE A CHILD WITH DOWN SYNDROME, HERE ARE SOME RESOURCES THAT HAVE BEEN MOST HELPFUL FOR ME AND MY HUSBAND, AND OUR FAMILY:
Your local Down Syndrome Association
To learn more about Jennie's story, read about the early years of her family's journey with Micah here: http://anextra21.blogspot.com