Finding Out: Down Syndrome Prenatal Diagnosis
It was March 23, 2010 when they told us our baby would have Down syndrome. I was 4 months pregnant. The news was devastating. It’s very fresh in my mind still, what it felt like. I can go there, my heart wide open. It was a season of mourning – grief for the typical baby I thought I was having, as well as a season of fear – anxious about how my life would be forever changed by a baby with special needs. That season ended almost immediately when I held my baby in my arms. The typical baby I mourned and the baby I feared, both are completely separate in my heart and mind from my actual baby, Whitney.
That spring there were Monarchs everywhere. I had never experienced it before and haven’t since, but I saw Monarchs fluttering around as I drove, on TV shows, and as art on the wall in between the first and second floor of the library where I was volunteering. In some way it was like they were messengers to tell me all was not lost, that it was all going to be okay – omens of my eventual rebirth.
It took us three years to get pregnant from when we decided we were ready to start a family. I had miscarried along the way and spent the first trimester cautiously hoping for the best. The 20 week ultrasound was an exciting experience. We held hands as we watched the technician inspecting and measuring every part of the child within. We had decided to let the gender be a delivery room surprise so we kept reminding them not to tell us what they saw. I was enthralled with the details – they could inspect all four chambers of the heart and count each and every toe. Everything went perfectly. Baby was perfect.
The next day I met my OB for a general checkup. “Someone called you about your blood results, right?” What? She had a thick accent. It was hard to understand her so she repeated it like three times. Um, no. No one called us. What do you mean? You’re my OB, aren’t you the one who calls me? “Your second trimester Quad Screen came back with indications for Down Syndrome. One in fif— chance.” To this day I’m not sure through the accent if she said fifty or fifteen. “It’s highly unlikely with your age and health, I’ve had lots of women get tested and everything’s okay. I mean if you want to know for sure you can get an amniocentesis.” Her voice drifted off as I started to retreat inside myself to freak out. I vaguely remember trying my hardest to keep it together as we were scheduling our next appointment but I was a mess. What if our baby has Down syndrome? No way. The chances are so low. This is a trial. I need to be brave, have faith, pray, and everything will be okay. Tyler and I discussed the amnio and decided that for our peace of mind we needed to know for sure that we could breathe again and wait for this baby, or if [God help us] it was somehow true then we could figure out what we needed to know to prepare.
Over the next few days I cautiously reached out to a few close family and friends, shared my worries and fears and asked them to pray. It was all I could think about.
What if? No way. But maybe? Oh my gosh, what if? Couldn’t be. Maybe my thoughts are making it so? No! It doesn’t work that way. I’ve learned my lesson and gone through this thought and faith exercise so it isn’t, right?
My friends. Oh how I appreciated my friends. Most of them assured me that everything would be fine, It has to be a false positive. I’m making a big deal out of something that really will be over soon.
The amnio came with an appetizer of genetic counseling where I remember the lady asking me if I knew what Down syndrome was, and if I had any questions it. I remember saying something like “it’s a mental problem, people have a lower IQ, right? And people look a certain way, I mean that’s pretty much it, right?” Well no. It’s usually a lot more than that, she proceeded to explain to us that the extra chromosome effects every cell in the body and there’s a higher likelihood for pretty much all types of problems, including heart problems, leukemia…” (and the list kept trailing on). Okay. That’s enough. I’m freaked out about the amnio as it is. We finished the procedure and they said we’d hear from them in about two weeks, which worked out okay because Tyler would be in NYC for business the first week.
The waiting time was really hard. I tried to continue life as normal and keep busy. I spent a lot of time with friends.
It was the next Wednesday. How I remember it was a Wednesday with the whirlwind that ensued is beside me. I hung out at my friend Ann’s house while she did something creative (as usual) and then stopped by my parents to hang out before heading home to coach a volleyball practice that evening. I was sitting at the kitchen table when they called. I had NO idea it was them (the call came a week early). “Is this Michelle?” Yes. “This is the —- calling, is this a good time?” Yes. I didn’t even think about it, I was nervous, but to avoid the call is admitting it’s bad news, right? I can take this, it will be quick and easy. But something in her voice was not quick and easy. I moved to the couch in the living room and sat down as she told me the results came back and our baby has Trisomy 21 – Down syndrome.
What? I don’t remember what else I said, or what she said, every fiber in me just wanted to get off the phone and rewind. This isn’t really happening. She said something about how I can get more genetic counseling but the insurance doesn’t cover it, What is it for? They could talk me through the options, and that I needed to do the consultation for termination. ??!! Terminate? This is worse than I thought. This is horrible. I hung up and all I could say was “MOM” she asked what is it, I was leaning over with my hands on my face unable to stop the flood of emotions. I choked out “Mom, she said it was positive. The baby has it. Down syndrome.”
Hot mess. Everywhere. I don’t typically cry. I do everything to keep from crying in front of people. I hate looking like a blubbering mess, even in front of my mom. I call Tyler. No answer. He must be in a meeting. I remember my sister coming home, and I’m face in hands crying and can’t even look up at her – my mom gently relays the news and she’s frozen, what’s she supposed to do? I don’t know. I don’t know what I want, scratch that, I want to go back in time, undo, this is a nightmare. Tyler calls back, I take the call sitting on the garden boxes in the backyard, how can I escape? Through tears I tell him our baby has Down syndrome. The silence. The distance between us palpable. I can’t stand that I can’t see his face, that he can’t hold me and tell me we’re okay. I apologize (I’m carrying the baby, I’m the one typically credited with growing it, making it beautiful, etc., so somehow this process inside me has gone wrong, and I didn’t do it right). I admit I’m afraid he won’t want to have more kids with me. He is doing his best to care for me with his words, he jokes “well, might as well have a lot of kids, what’s there to worry about now?” He loves me. I don’t remember what else was said. He canceled everything and took the first flight out, which would get him home the next morning..
That afternoon was a mess. My sister helped me cancel practice and my parents drove me home (only to realize I didn’t have my keys). Somehow we ended up in the backyard, my mom and I doing yard work side by side while waiting for my dad to bring my car. I pushed the rake around with force and furiously tried to distract myself from reality. I went back and forth between tears streaking down my face and a numbness that felt like my soul took a break altogether.
That night I slept at my parents, in the bed I grew up in. I thrashed and whisper-screamed and exhausted my face with tears. I cried out to God but also didn’t know what to say. I felt betrayed. Maybe condemned. Very sad. I lay there and grabbed hold of my shirt wanting to tear it like biblical sackcloth and ashes. I beat my chest. All the while my swollen belly and the discomfort of my pregnant body reminding me that I’m not alone, this baby is experiencing this with me. I whispered I’m sorry to the baby. I could not stop my grieving, and was embarrassed that the baby was somehow witnessing this extremely selfish expression of grief (as it felt). Baby hadn’t changed, the extra chromosome had been there all along – it’s just that now I knew about it and the baby I thought might be in there certainly wasn’t. And I also felt guilty for letting this news devastate me, if only I were a better person, I wouldn’t think this is so terrible. And I rationally know God doesn’t work this way but I had a guilt that somehow if I prayed more for this baby or had more personal discipline then surely it wouldn’t have happened to me.
But I’m stuck. There’s nothing I can do to undo, to get back to having a “normal” baby. I guessed that maybe a teen mother can relate, knowing that this baby would forever change my life. Down syndrome would be permanently linked to my story whether I liked it or not (and I did not). It felt unfair, like I won the wrong lottery…the chances were so in my favor for this not to happen, and how is it that everyone else has normal babies but me?
I thought of all the people stopping me at the grocery store to assure me that I’m glowing and ask how far along I am. It seemed that I had to announce to the world that no, I’m not glowing, no, I’m not excited, thank you, my baby has Down syndrome and there’s nothing I can do about it. (When the shock wore down I embraced that the news was mine to share with whomever I wished and the checkout lady could say whatever positive thing she wanted and I didn’t have to tell her anything).
I thought about all the bad things this could mean…I couldn’t grasp that much good could come out of this. I thought of baby not being able to have children, what if I’m never a grandma. I thought about never being empty nesters, will we go on vacation just the two of us again? And the likelihood of outliving our child – it’s just not how it’s supposed to be. And well, Princeton’s out. I guess baby might not go to college at all. What about drive? Work? Play piano? Enjoy books, classical music, poetry, gardening? I thought about kids at school making fun of my kid. About social awkwardness, about people calling my kid the R word. I thought that people won’t think of me the same – assume I’m not smart, think of me as unattractive, and awkward. I worried that people wouldn’t want to hold our baby, or come visit, that they wouldn’t know what to do and would just avoid feeling uncomfortable. I worried our baby isn’t cool enough for our church community. I worried we wouldn’t get invited to birthday parties. I wondered if there was a surgery that could make the tongue smaller so speech will come out clearer. I could not stop thinking of all the ways this might play out, all the things the baby might not do, and all the difficult situations I might have to face. At some point (days later) my mom reminded me that we’re having a baby first, an infant…I don’t need to think so far ahead, that I just need to take care of the baby when it gets here. And baby’s needs would be the same as any other baby’s needs: eat, sleep, clean, LOVE.
I remember what people said when I told them. It took weeks to tell family and friends and we couldn’t do it without crying. My friend Elizabeth cried when she heard and it felt to me like our souls connected – that she was feeling with me. My friend Amy reminded me how blessed I am to have a baby at all – and that each step of the journey involves faith and trust. Wendy said “How could God do this?” Christine sent us a link to the regional center to enroll for services and organized a prayer gathering at her house. Jeremy and Stephanie cried out in prayer with heartfelt words that I couldn’t muster on my own. Tingting walked with me and listened. Aimee and Zack dropped sweets on our doorstep. Christie said she imagined a happy little blonde girl playing soccer and the verse about God’s wisdom being different from the wisdom of this world. Dean said it’s a good thing, because our community needed a baby like this. Lindy told me to stop when I said ridiculous things about being embarrassed. Rebekah said she can’t wait to meet baby. Other people said that too, and those words sank deep.
Lots of people assured us that of all people we were specially equipped for such a child (what?!) that somehow God chose us for this [because we’re such great people]. This was probably the hardest comment to handle…if this was a reward for past deeds or faithful living, then I wish I would have rebelled a long time ago. I could not embrace it as a blessing or a reward. I kept thinking would YOU feel happy about this sort of blessing? At the same time, thinking of our baby as God’s intentional design, rather than a chromosomal oversight helped me start believing the diagnosis would have some positive meaning and purpose. Perhaps I might be changed for the better – caring less what other people think, or being more comfortable around different people. A few really close people with tears and fears for our future asked us to “consider our options” and start over. I could hear the heart behind their voices and knew the love in that concern, but instead of being tempted to escape those were the moments where I didn’t resist the baby – where instead, I defended it. I hoped our baby would somehow prove their fears wrong, that baby would demonstrate a life worth living.
What were the alternatives some wanted us to consider? Terminate, give up for adoption, or welcome into the family.
Most of the medical community made it clear they expected us to terminate. We realized the vast majority of prenatal diagnoses are terminated (while debated for its accuracy, some claim that it’s up to 92% for prenatal diagnoses). Termination kept coming up at our appointments. For instance, when scheduling a prenatal echocardiogram the secretary urged us to get our appointment immediately, saying we might not even have time to get insurance approval first and that it’d be a risk of paying hundreds of dollars but that we didn’t have time to wait. At first I fell for the urgency, we need to know what might be wrong with baby’s heart! Oh no! But then it dawned on me that once we knew what would they possibly do about it? Operate prenatally? It didn’t seem possible that baby’s heart would be that bad so I asked what’s the rush. She said that I’m near to the cutoff and that I needed to get in so that we could find out the results with time to terminate. Anger. I’m not going to terminate! Stop making me feel crazy for keeping this baby! Can someone please write on my chart with a sharpie to stop bringing up this option?
I learned that there are lists of people who are waiting to adopt babies with Down syndrome…I was stunned. You mean someone would be excited to be in my situation? I assumed I owned the pity party and everyone was secretly relieved that the lot that fell on me was not on them. It would be different if I had been barren and decided my mission and service to the world was to adopt these poor babies with Down syndrome, oh what a saint I would have been then, if I chose this. In reality I was the one bringing the helpless babe into the world, without me there wouldn’t be this baby with all these needs for extra love and care, and I didn’t get to decide to make Down syndrome part of my life story – it just happened to me.
We would welcome the baby. There was never a doubt that this was our selection, but I had to work through a lot of my resistance. I cried a lot at church. I swear we sang David Crowder’s Glory of it All every other week and I just couldn’t handle the chorus that repeated “oh everything will change, we will never be the same, we will never be the same, we will never be the same….” I knew my life was changing in a huge and permanent way. I hoped for redemption for my tears, that I would find myself changed for the better. And so I cooperated with fate as best I could even if it meant emotional breakdowns every time I was in the car alone or somewhere else where I had time to think.
Baby showers were hard but they helped. My dear sweet family and friends worked so hard to put together two really nice baby showers. I remember some friends asking me about what I wanted and it was so overwhelming to me to think about – I didn’t want to celebrate, I was grieving. Thinking about baby coming made me cry…how was I supposed to manage a shower? Instead of sadness, I found myself surrounded with generous love, support, gifts, and prayers. People were genuinely excited for this baby and it started to catch on with me, too. I also remember when my mom insisted it was time to start decorating the baby’s room. We painted a tree on the wall and set up the furniture. We found a way to fold the tiny little clothes and stack them in drawers. My mother-in-law helped me make a cover for a glider and put up a cluster of dragonflies on the wall. I really enjoyed being pregnant – and I enjoyed that on appearance, everything was still normal while baby was still inside. Gradually, the grieving shifted into curiosity about who this baby might be.
When Whitney was born there was still a tiny part of me that hoped it was a grand mistake and all would be normal. But the moment I saw her I recognized the Down syndrome features—and it was okay. I wasn’t surprised or disappointed, that’s just what it was. She was ours and all I had to do was hold her close. In the past three and a half years we’ve taken one step at a time. This way the fears are manageable. Yes, there have been challenges – like heart surgery and developmental delays such as not walking until after her second birthday and still not being potty trained. But we have also gotten many hugs, kisses, and “I love you’s.” She sings, she plays piano, loves books, and the list of things we’ve discovered she can do is far more exciting than the lsit of things we thought she couldn’t.
I’m not sure when the metamorphosis happened but it did. The monarchs were right – something beautiful was (and is) brewing. My heart grew to love my little girl so much that I can’t stand the thought of my life without her – just the way she is. From the moment she was born the overwhelming descriptor I come back to for Whitney is delight. That dark spring and summer four years ago feels so distant. It didn’t take long to see that Whitney’s is a life well-worth living and I’m truly grateful she’s living it with me as her mama.