Trisomy 21: Finding Magic in the Unknown

At about three years after my son was born, my husband and I thought we were pregnant again.

Before that moment, we had truly wondered if we would ever be ready for another child. We had a spirited little boy who was our world – maybe one was enough. We also had two budding businesses that kept us occupied. Then when we found out that I was just cycling with my new team of women at the midwifery practice where I worked, the disappointment we both felt was our sign that perhaps we were ready… finally.

After six emotional months of trying to get pregnant –  tracking cycles and ovulation and temperatures and it “not working” – I decided to visit my friend and intuitive guide for some guidance before talking with fertility specialists. I needed to know if another baby was in the cards for our family. I didn’t want to feel disappointment at the monthly return of aunt flow each time she came to visit. I needed to know if I should just be okay with one child and move on with my life.

Not only did my intuitive friend see trees with the leaves turning to indicate timing of my baby’s arrival, but I learned a very powerful little girl that was coming though. Sure enough, three weeks later, we found out I was indeed finally pregnant! And at five weeks in, my son confirmed he could hear her…his little sister, as he placed his ear to my belly. And according to my son, her name would be “Treesee” and he had “lots to teach her.”

From then on, everything in my pregnancy would remain more magical and surprising than I could have ever imagined. Well….magical…yes, and worrisome, too.

Seven weeks into the pregnancy, I started spotting. With fear as my companion, an early, urgent ultrasound would confirm a weird attachment issue with my placenta, also known as a “subchorionic bleed.” There was little we could do. We would just have to wait it out – turning on the “worry button” that is often a part of a woman’s pregnancy.

But what that abnormality would do for us was again, magical. The condition, in addition to my age, (36, a.k.a Advanced Maternal Age) allowed us to be recommended to a Perinatologist, or Maternal Fetal Medicine Doctor – someone who specializes in the medical abnormalities of pregnancy. This would prove to be what I believe is one of the luckiest aspects of our story.

At 19 weeks, my husband and I went in for our routine anatomy scan. The morning before it, one of my colleagues asked me if I was excited to see our baby. I was….kinda. I couldn’t shake the feeling that we were about to find out some big news and that I felt a pit in my stomach. Working with midwives, I saw the spectrum of what pregnancy could look like and perhaps I had an intuition that something was different about my baby.

In the tiniest of rooms, watching the wonderful ultrasound tech move over my belly and seeing the cute movements of our baby, I was in awe, curious, and truly in love. The tech confirmed that I did indeed have a baby girl in my belly and then left the room not too long after that. As we waited for our doctor to come in, we laughed at the intuitiveness of our little boy and discussed how excited we were to get to have both a boy and a girl. And then eventually we started to notice that it was taking forever for our doctor to come in the room and we started to wonder.

When our doctor finally entered the room, she brought an overwhelming sense of calm and gentleness. She was friendly and had kind eyes. She immediately went to work looking over the images on the ultrasound screen once again.

Then, in the most gentle and matter-of-fact way, she began to tell us that we were having a little girl that had a “strong chance” of having Trisomy 21, also known as Down syndrome.

Everything zoomed in for me. I began to hear every detail she was saying (and even those she wasn’t) as if it was all in slow motion. I also noticed all the ways my body was responding – shock, heart racing, pit-of-stomach, disbelief….

Me? THIS baby in MY belly? What are the chances? What does this mean? Why me??

So many thoughts and emotions flooded in. I asked through desperate tears, “what are the EXACT chances?”

As she left the room to give us time to process the big news and to go through her worksheet that would indicate the “chance” of this genetic abnormality being true, I crumbled into my husband’s chest. I apologized for being old and for it being my fault that our baby would have a disability. (I would eventually learn that this is how most of us respond to such unexpected news. Especially in the moment. Shock. Disbelief. Sadness. These are all part of the grief process.)

As we centered ourselves in love and tried to reconcile all the emotions that were flowing through us and between us, we agreed that it didn’t matter what the tests would show or what the chances were…our little girl had chosen us and we needed to get clear on what it meant. But no matter what, this was our baby.

Our lovely doctor returned to show us the probability worksheet and we saw that there was a 1 in 7 chance that our baby would have Down syndrome. I learned SO much in those next few moments as our doctor shared so much information about our special daughter and next steps. We learned she had a “bright spot” in her heart – a condition that often indicates a genetic abnormality. I like to think it was her heart sparkling so we would see her little bright light ahead of her birth and have time to prepare mind, body and spirit.

My doctor’s parting words with us were, “She’s lucky to have you!” I had no idea how lucky we would be to have her.

The days and months following that day would test me as a mother like nothing I had ever experienced before. From holding a newborn with Down syndrome the day before receiving the positive results of the blood test confirming Trisomy 21, to the challenging conversations I had to have with so many in my circle, none of it was by chance.

It’s amazing how much more sensitive to words and intentions I became holding my special daughter in my belly. I learned who I could be open and raw with, and with whom I needed to hold my cards close to my chest.

I hated hearing the words “I’m sorry” when I shared our news, like somehow my baby was something I should mourn.

And yet mourning did happen.

Grief is an interesting experience when you’re carrying a baby in your belly. I had days where I would cry by myself on the way to work, or cry in bed with the lights out, for reasons I still can’t explain. I would apologize to her each time for feeling sad about her having Down syndrome. I had to learn to balance self-love with self-compassion as I navigated what it meant to love my baby but grieve the future I thought I would have with her. And then sometimes there was a sense of deep gratitude because my world became SO much more colorful with her in it. I began to see people with disabilities in a whole new light and to learn what Down syndrome really was.

And I worried. A lot. I wanted a VBAC (Vaginal Birth After Cesarean) and thought this new knowledge about our baby might make that difficult. I held my breath the whole time we met with specialists to check her heart; more than half of the population of children with Down syndrome have a heart condition and many have a whole host of other medical conditions. We met with a pediatrician who specializes in children with Down syndrome who normalized the process and offered so much information. We started to become specialists on who our daughter might be: a child with Down syndrome who might need extra support including surgeries, therapies, and special accommodations.

I often wondered how I would feel when I met her. I wondered if I would connect with her – ever.

I worried she’d have more medical issues that we couldn’t see, even with the best ultrasound. I looked ahead 5, 10, 20 years and worried for her future and how others would treat her. I knew I would love her but I had no idea how I would navigate a world where people might not see what we see. And I worried a lot about my son and how having a sister with Down syndrome might affect him. I kept hearing the quote by Pam England: “Worry is the work of pregnancy.” Indeed it was part of my work so that I could be the best mama possible for her.

Everly came almost 4 weeks early at 3am on a warm early fall day with the leaves turning.

She was born by cesarean birth after a long, challenging labor. She came into the world sticking her tongue out and protecting her face….intuitively, as the doctor would accidentally nick her elbow due to her position. She latched when I tried to breastfeed her and she was absolutely beautiful – admired by all in the room!

The most challenging times were in the NICU. Although we got a room where I could see her, it was not a simple task to mindfully navigate the NICU, especially after having a cesarean birth. It was there, though, that I learned so much about advocating for mt daughter and believing in her as a human. It was there I learned about setting boundaries for our family, and about breastfeeding a baby with low tone. As I was healing from a challenging birth, she was learning to breathe and feed. We both had to learn how to work together as a team so we could eventually go home.

One thing I will never forget was the moment I really got to see her by myself. It was sometime in the middle of the night the next day after her birth. She seemed so tiny and vulnerable on the warming bed in the NICU with all the wires and oxygen tubes. I remember thinking, “she’s so beautiful!” Her tiny hands with the palmar flexion creases, her shorter legs and arms, her thicker fold in the back of the neck…all the physical signs I had read about showing that she had Down syndrome were the things I loved MOST about her. I just wanted to hold her, heart to heart, and just love all of her.

I knew in those moments we would always be a team. She and I would have so much to share with the world. And I promised to be her biggest advocate and to love her through whatever challenges lay ahead.

We are now a few months shy of 3 years since welcoming Everly into the world. As with most mamas, those early days after birth were some of the most challenging. Between triple-feeding (breast, pumping, bottle, repeat!), healing from major abdominal surgery, appointment after appointment, therapy after therapy, overcoming NICU PTSD and trying to learn to mindfully mother two children, I am grateful those sleepless nights are behind me. I just recently stopped breastfeeding Everly – something I could never have foreseen in the first complicated weeks while managing a supplemental nursing system (SNS) and nipple shields!

Today I can say with certainty that my journey with Everly has been one of my most magical thus far. Her light is so bright. Whether we are making our way through the grocery store or hanging out in Starbucks together, her smile and engaging personality captivate the room. She expresses herself with a wide-range of emotions and has no problem letting us know her wishes! All those worries I had about connection, how people would treat her, and how she would function….they seem silly now as I watch her make her way through the world. Her brother adores her and does indeed “teach her things.” Our village is amazing – and I am so grateful for the people who have come into our lives because of Everly and her extra chromosome. They are like family now.

Honestly, most days I forget she has Down syndrome. I just see my spunky, smart, beautiful and funny little girl. By no means is my life easy, nor has my journey with either of my kiddos been without challenges. But it’s not because my daughter has an extra chromosome. Everly’s extra-specialness has made me a better person. I’ve learned how much a person can embody joy, love, and pure innocence. Because of her, I am more compassionate, understanding, forgiving, and able to see the deeper beauty in humans. And for that, I am forever grateful she chose me as her mama.

Rebecca Peterson is a Colorado native from a small town most have never heard of. She also hosts yoga and meditation retreats for mothers, guides mamas through prenatal yoga, and supports parents through childbirth classes when she’s not chasing after her two spirited children while her photographer husband lingers behind to catch all of it for her family’s storybook.

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