She said, “You Don’t Have a Child With Down Syndrome”
By: Mandy Osterhaus Ream
Tags: Special Needs, Parenting, Uncertainty, Parenthood, Children

She said, “You Don’t Have a Child With Down Syndrome”

But we did.

Photo by Viviana Rishe on Unsplash

When our first son was 18 months old, we decided it was time for a thaw. We had six frozen embryos and were ready to take them out of the freezer and try for a second child. A very technical process where, like chicken from a deep freeze, embryos are defrosted. Four were viable, cells dividing normally, and ready to be placed inside my uterus.

Yes. It’s as romantic as it sounds.

Our doctor, fully aware of our parameters (we would not selectively reduce a fetus and we didn’t want to be a TLC reality show: “Jud and Mandy Have Too Many”), implanted all four.

During our first round of in vitro fertilization in 2006, four embryos were implanted and I delivered one healthy baby boy. The doc’s thinking here was based on my 20-plus years of endometriosis and we were hopeful one embryo would stick around, maybe twins.

So, with this background, we held our breath and waited to see who might stay with us this second time.

This process is pretty straightforward and linear. We made this decision. The doc concurred. We moved ahead. But this is way too sterile.

Those of us who have walked the road of infertility know this intimately. My husband and I were the lucky ones, with two successful pregnancies after two IVF attempts. I am aware even typing that sentence, a woman or man reading this might be double-birding their screen right now, the pain and longing from unsuccessful attempts uncontainable. It is all so grueling.

With our second round of IVF, we were reintroduced to the familiar protocol of daily injections of progesterone, gracefully given in one’s ass. I was spared the days of stomach injections to stimulate eggs at my ovary doors. And I didn’t miss the accompanying bruises that streaked across my abdomen.

We settled into the first trimester, as one does into a cozy couch (and by settling into a cozy couch, I mean pacing nightly with both nausea and anxiety while parenting an almost-two-year-old.)

During our thirteen-week visit with our fertility doctor, she noticed a slight thickening in the back of the baby’s neck and said, “you don’t have a baby with Down Syndrome. But it would be good to see my perinatologist friend to take a look.”

Um, what?

In all the decisions, practical and philosophical, that accompany the decision to pursue IVF, we chose not to do genetic testing on the embryos. For many reasons. But at the time I didn’t want to have to contemplate one more set of medical ethics questions. I didn’t have the bandwidth. I also believed we were manipulating the system enough as it was, we wouldn’t do so with this.

There was also the math. Eleven embryos total when we got started. Four implanted for our oldest. Four implanted for this pregnancy. One baby hanging on in there. We don’t have a baby with Down Syndrome.

Here is where the pregnancy took a turn from nausea and anxiety to full-blown panic and fear.

After our first ultrasound with the specialist, she began her response by saying, “With all due respect to Dr. H…”

Shit.

And all the medical ethics questions I had tried to avoid came flooding in as we pivoted away from typical “What to Expect When You’re Expecting” to “Are You Sure You Really Want to Have This Baby?”

It is important to pause for a minute and talk about denial and how my path diverged from my husband’s. Our fear began to manifest itself in different ways and I was not open to his. We had to constantly interact with the messaging from genetic counselors that this was going to be a disaster. It wasn’t explained in those words exactly but when a list is handed to expecting parents of all the possible (what we interpreted as “likely”) problems and complications that will befall the unborn baby, the word “disaster” seems fitting. Perhaps my biggest beef with this list was that it included “Leukemia” and omitted “Stubborn.” That last one would have been a damn helpful inclusion.

And yes, leukemia is on the list. At that moment, I was deeply grateful one of my dearest childhood friends is a pediatric oncologist, who I called after this appointment in sheer panic. “How many patients with Down Syndrome have you had? What is the likelihood? How can I have the genetic counselor taken out and make it look like an accident?”

My wise friend gently said, “let’s meet this baby first and we’ll go from there.”

Ok.

With each appointment, we inched closer to the decision to get an amniocentesis, the test which can offer the most conclusive, but not 100% definitive, answer but also comes with the threat of miscarrying. My denial had me spinning with what-ifs while my husband quietly struggled with a desperate need to “just know.” He never pressed. He kept much of his turmoil to himself but was hoping we could get the test and prepare ourselves for the actuality of the diagnosis, or at least get a little closer to certainty.

It is his story to tell, but there was an element of thinking that if this ended the pregnancy it wouldn’t be all bad. There would be some relief. I understand that better now.

But, the baby was alive and kicking inside me. There was mama bear shit happening that would not even entertain that possibility. His fear was real. And so was mine.

We went with the amnio after a call to some close friends with a two-year-old son with Down Syndrome. Both were encouraging us to move forward with this, but her words were direct, “Do it. You will be glad you know.”

She was right.

After the fluid was extracted and the doctor held it up, she knew almost conclusively by the color. Down Syndrome.

This was about week 20. We now had 20 more weeks to let this sink in. (14 actually. He arrived early.)

Our Oldest, 2009. Photo by the Author

And I confess those following weeks were a blur. I mentioned I had an almost two-year-old, a creative funny boy who was always in motion. I was and am so grateful for him, for the distraction, for the fun it was to bake with him and paint with him and read with him. We three got ready for this new baby brother.

Down Syndrome.

What I do know is that throughout that time I held out hope, or held onto denial. Nothing is 100% conclusive. I secretly listened for stories of false diagnoses. I combed the Internet late at night. I began to collect stories of amazing people with Down Syndrome doing amazing things, beating the odds. Not having leukemia. It is a challenging juxtaposition to hold: Hope in what might not be and hope in what is.

In week 36, one month to the due date, my water broke at noon on a Saturday while watching TV with my husband. Our oldest was next door playing with our close friends when we called to say, “Um. I think we’re having a baby today. Can he stay with you?” His first sleepover.

The details of the afternoon are rather benign. Basic labor, epidural, Pitocin to get contractions going, nurses telling us heart-warming stories about cousins, friends, siblings with Down Syndrome who are amazing. This was the gift we did not anticipate. Knowing beforehand that our child had Down Syndrome meant everyone who came into the room knew. And it encouraged them to dig around for their own heartwarming experiences to share while we waited.

But denial was still in the wings, there was still a lingering drop of hope that maybe we wouldn’t have to start this journey.

This was stoked when our 5-pound boy was delivered after one push (if I could order this delivery as Christmas gifts for friends I would) and the resident pediatrician came in for the initial checks. He looked. He checked. He left. No word about DS. We looked at each other.

Ten minutes later he returned and exclaimed to the room, “This baby has Down Syndrome.” Our boy had faked out the pediatrician! There were no significant markers, no palmar crease, no pronounced eyes, except for the regular distortions that occur with swelling.

We didn’t realize we were holding our breath until the actual actuality set in.

Our boy was here. He was exquisitely small and beautiful, all the clichés. He was healthy.

He had Down Syndrome.

Photo by Author

That is not the end of the story. We are ten years in now and I am beginning to dig into the corners of my mind where I have stored the harder, unexamined parts of life with Down Syndrome. I am afraid to go back there, with the dust and cobwebs. But even if I avoid those places, they still exist and not only in my mind but in a larger cultural conversation, as evidenced in a recent 2020 article in The Atlantic.

The medical ethics questions haven’t retreated, rather they reemerge from time to time when I least expect them; when I’m going about the day-to-day.

So, this is a start. A way of pulling out the boxes of ideas and feelings I have tucked away under the stairs. The conclusion here a beginning.