A life-altering diagnosis: I just found out my unborn child has Down Syndrome

Guest post by Megan

Photo by spaceodissey, used under Creative Commons license.
I knew I was pregnant the moment I conceived. Call it a woman’s intuition or a case of mother-knows-best, but I knew. As the weeks went on and I could finally take a pregnancy test and receive reliable results, my partner Brian and I stared at the giant plus sign and I said, “I told you so.” As things progressed, I also knew I was having another boy. Friends and family members would wink and say, “What if it’s a girl this time?” And I would smile and nod and join in the what-ifs, but I always knew deep down that Atticus would be getting a little brother. And when our doctor confirmed this at 16 weeks, I just shrugged at my own intuitive nature.

So when I got additional news about our son, I was shocked that I didn’t already know…

It all started at our 20-week ultrasound. It’s supposed to be a fun glimpse at the life growing inside, a check of basic anatomy, and a reassurance that all is well. For most moms it is. Our doctor found that our little guy had slightly dilated kidneys, but she wasn’t worried about it too much. Even so, she sent us off for a level II ultrasound the following week, just to make sure that it wasn’t anything serious.

Brian offered to come with me, but I took my doctor’s reassuring words to heart and told him I’d be in and out in no time at all. He had just started a new job and couldn’t realistically make every single appointment. I did a little research into what dilated kidneys could mean, and learned that it could be anything from a temporary fluid build-up that corrects itself before birth, to a marker for Down Syndrome.

As I was lying on the table with the unbearably cold ultrasound jelly smeared over my abdomen, it became clear to me that the ultrasound tech was looking for other signs of Down Syndrome. She measured the heart, the level of fluid behind the neck, the length of the arms and legs, and the shape of the pinky finger. She said very little as she worked, then told me the doctor would be in soon to talk with me. It turns out that in addition to the dilated kidneys, the baby had other markers for Down Syndrome.

A genetic counselor came to talk with me and rattled off a number of statistics and testing options, ending with a recommendation that I have a DNA test that can definitively say whether the baby suffers from a chromosomal abnormality. She stressed that there was still less than a 1% chance that anything would be wrong and the test was merely a tool to give me peace of mind. The results would take two weeks and she’d call me when they came in.

Enter the longest two weeks of my life. I must have googled every variation of the words “soft markers for Down Syndrome” a thousand times. Sometimes the results made me feel better, more often they sent me into a tailspin of worry. In these two weeks, I learned that my friend Susan was in the ICU after a horrendous car accident and every member of our family had a terrible bout with the stomach flu. It was a dark time.

I finally got a call from the doctor: our second child has Down Syndrome.

The news was mind-shatteringly, heart-wrenchingly painful. I managed to cycle through a wide series of emotions in the matter of minutes. I grieved for the “normal” child I expected. I cursed whatever higher power would place this on our shoulders. I stared dumbfounded at the wall thinking that if I remained still long enough, the room would stop spinning.

We were suddenly faced with a multitude of choices. According to recent statistics, 80-85% of prenatal Down Syndrome diagnoses end in termination of the pregnancy. It crossed my mind for a moment, and should I have received this news at 12 weeks into my pregnancy, it would have been a viable choice. I can’t judge women who take this path when faced with such severe news, even when they are as far along as I am. The emotional, financial, and physical implications of raising a child with Down Syndrome are mind-boggling. But for us, at 23 weeks along, this wasn’t a choice we could make. Our baby is no longer a clump of cells. I’d been feeling him roll and tumble in my stomach for weeks. We gave him a name. We gave him an identity. Termination was not an option for us.

Apparently there are waiting lists for infants with Down Syndrome so the option of placing him for adoption seems a legitimate choice. Despite all I said above regarding the true “life-likeness” of this child, he’s still an abstract idea. He’s no one I’ve met yet, and our bond has not developed. Somehow having this diagnosis now instead of after birth actually makes it harder for these reasons.

I only had attachments to what this child could become, and I expected him to become something very different than he will ever be. That’s not to say that he won’t be amazing, but raising a child with Down Syndrome poses a new set of limitations. I will likely never see him graduate from college. He probably won’t marry or have kids of his own. He will be either fully or partially dependent on us his entire life. And since the life-expectancy of an individual with Trisomy 21 is 55-60 years old, I very well may outlive my son. These are harsh realities, especially for parents already daunted by the task of raising a two-year-old in a new city, working new jobs, and starting new lives. We’ve been isolated and lonely for months now, and this news just makes us feel completely lost.

Nevertheless, I don’t think I can let someone else raise my child. I know that even if I did decide to make an adoption plan, I wouldn’t be able to bring myself to let him go when the time came. And despite my surprise at this new challenge when my intuition into every other aspect of this pregnancy seemed so strong, I do know for certain that I will love him no matter what when he arrives.

I feel like most people face at least one big challenge in their lives. Sometimes this takes the form of illness or the loss of someone close. Sometimes it’s poverty, unemployment, or addiction. We all have a moment that tests our strength and willpower as human beings and, until now, I’ve never really experienced something this life-altering. So if I’m due for a challenge, I feel so fortunate that mine is also the blessing of a child. He will be loved.

Comments on A life-altering diagnosis: I just found out my unborn child has Down Syndrome

  1. I would never have left a comment on a post like this if not for a nifty little tracker called sitemeter on my blog. I happened to notice some traffic to my blog from here and well, here I am. And why would I have not ordinarily left a comment? Well you see, I have been told by a number of people, medical professional, therapist etc., and the hardest people of all, mothers from within my DS community, that I would hardly be a good welcome wagon for families just receiving a Down syndrome diagnosis. And you know, that still stings. A lot. And I hesitate reaching out. I hesitate in sharing our story. Which really is, our remarkable daughter Zoey’s story.

    We do not have the fairytale life with a child sporting an extra chromosome like Kelle Hampton. But that does not make our life, any less beautiful. Our road has been different and Zoey’s journey arduous and hard. But it has been blessed and magical and gifted. In ways we could have never imagined.

    We often tell people, when they see the span in our children’s age, and why we started over when that empty nest was within reach, and we say that Zoey was what we were waiting for all of our lives.

    You know, I have learned and lived by this over the last 5 years: The day we held our seemingly perfect and typical babies in our arms, we had and have no idea what lies ahead in their future. We do not know if illness, a tragic accident, alcoholism, drug abuse, or say unforeseen mental illness, will sadly befall them. We just can’t possibly know.

    With these children we have a little heads up. The ability to prepare and seek out help and support. Forewarned is forearmed mentality. I think that is a gift that cannot be missed.

    Megan, I am sending you love and light across the miles. Peace and strength for the journey. I may not be the best of welcome wagons but I feel like it is my duty and actually my privilege to share Zoey’s story of faith and hope. It is infact my honor to do so.

    Take care and oh, I forgot to say: Congratulations. That gets missed a whole bunch when life happens while we were busy making other plans.

  2. Reading this was very comforting. My husband and I an our 6 yr old son just went for our 20 week ultra sound where 2 soft markers were seen. Echogenic bowels and a calcuim deposit on the heart muscle. One of either probaly wouldnt seem too worrysome but because of both a geneticist came in to speak to us. We are waiting for the Materni21 results. But Im already deep into the google searching. Im apppauled at how many “just abort” responses pop up, we are not considering that at all, im jut soothing myself with stories. Thank you all for yours. God bless.

  3. Thank you for sharing this incredibly personal journey with us. And thank you to Offbeat Families for continuing to share stories that REAL people care about. What an incredible journey you’re on, and you know this already, but ultimately, LOVE will guide you.

  4. I will tell you the same thing my friend (her youngest daughter was born with Down syndrome) told me when my second youngest daughter was diagnosed with Down syndrome. “You have been given a most precious gift unlike any you have ever known” It’s not going to be easy raising your child.. its not easy to raise any child ..but it will be the most worthwhile journey…and you will have the most special connection with another human more special than you will ever know with anyone else ..including your other children.. congratulations on your new baby 🙂

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