On a Friday afternoon, I received the call from our OBGYN. I was alone, at home with two small children, and I basically tripped over the both of them to hear the news in a separate room. I had been waiting on THE call all week, the call to learn our baby’s gender, and my head was so preoccupied with the mental image of my children with their new brother or sister that I didn't really stop to think why the doctor was the one making this call. She said, "you are having a girl"! And I couldn't wait to hurry through this call to make my calls. But then she said there was something else she needed to tell me about this test, and everything felt like a fog. "The test", she said, " is indicating that your baby has an increased risk of Trisomy 21".

She spent some time with me on the phone. She asked me if this made a difference to us, I said no. There was a plan made on the phone for a referral to a maternal-fetal specialist to discuss further testing and prenatal care, but a Friday afternoon phone call meant we would wait days to see that specialist. I called my husband, Philip, and we spent the next few hours trying to understand the non invasive pregnancy test (NIPT) and its accuracy. Did this mean she would definitely have Down Syndrome? Could this be a false positive? Then, I started to google (and really you should NEVER google!). I wanted to read everything about Down Syndrome. I found lists. Long lists of possible medical complications: MISCARRIAGE. STILL BIRTH. HEART DEFECT. GASTROINTESTINAL PROBLEMS. SLEEP APNEA. OBESITY. LEUKEMIA. Plus I had all of my own misconceptions and stereotypes about disability which only added to my panic. Questions like: will we be able to travel with a child with Down Syndrome? Will she be able to make art with us, cook with us, garden with us, take bike rides with us, read books with us? Will I have to completely relearn how to do everything as a parent? What if I'm not patient enough, good enough, strong enough?

What I needed to see more than anything was a child with Down Syndrome. I opened Instagram and discovered hashtags (#theluckyfew #nothingdownaboutit #downsyndrome). I spent hours and hours scrolling through pictures of babies, children, families at the beach, at church, making pancakes on Saturday morning, swimming, riding bikes, reading books, living full lives. It was hope. I remember wanting to show Philip every picture, reading aloud to him so many captions that resonated with me, and sharing in the excitement about this new, unexpected part of our daughter that we had just discovered.

Our diagnosis story is the reason we made the decision to share about Down Syndrome publicly. I have found that our experience is sadly common. Global termination rates (US estimated 67%; UK 90%; Iceland 100%!) tell us exactly how much people with Down Syndrome are valued. Some countries even claim to have “cured” Down Syndrome. I knew the statistics prior to our visit with the specialist, but I was completely unprepared for the conversation that took place.

After we clearly stated that we would be continuing our pregnancy regardless of a diagnosis, and that termination would never be a consideration for us, we were reminded multiple times that we had to "act quickly" because we only had a small window of time to terminate. Our doctor told us that he wanted to help us make an informed choice, while encouraging us to think about how our baby would burden our marriage, her siblings, and ultimately society. He said, "it’s very easy to love a baby" and “you should know that this isn’t only a special needs baby but will also be a special needs adult.”

Our doctor felt like it would be important to confirm the diagnosis through a procedure called CVS and again reminded us that we needed to schedule this quickly so we would have time to terminate the pregnancy.

We left without being connected to a support group or another family to show us what life might look like from someone actually living that life. We didn't even receive a pamphlet about Down Syndrome. And we are not alone. Many people experience diagnosis in ways that perpetuate myths about disability and leave families like ours terrified, misinformed, and pressured into making fast decisions about continuing their pregnancies.

Thankfully, after leaving that office, we found our own connections to families through our local Down Syndrome support group and online platforms. My pregnancy was marked by fear of the unknown, especially of medical complications, but also the joy of connecting to this new community.

Through prayer, I made the decision to wait until birth to confirm her diagnosis, and with the statistics adjusted for my age at the time of conception (35), we were given a 86% chance of our baby receiving a diagnosis of trisomy 21. The 14% was strange to consider, especially thinking about the moment when I would see her for the first time after birth. That had always been such a special, pure moment of connection and now it carried a new meaning. It would be the moment when I would study my baby's body to find out if she had Down Syndrome. And what if I didn't know, because of course there were stories about families waiting weeks for a confirmation, or the husband who texted his wife a photo of their child's single palmar crease from the nursery. I worried too about the vibe in the hospital room. What if the doctor knew before we knew? Would someone else tell me first and with what words and what tone? The trauma of our diagnosis story was very acute when preparing for the birth and ultimately the final confirmation.

One of the benefits of knowing that she probably would have DS was that it gave me the agency to create the birth experience that I wanted. I was able to have a conversation with everyone in the room about what I needed, helping me feel safe and empowered during labor. With the awareness that it had been the last push and that she had found her way into this world and that this moment I had anticipated for months was really happening, I found that my whole body wanted to turn to her and hold her and know her.

Her face had many of the features of DS that had become familiar through social media- in one inhale, I saw her eyes: swollen, red, slanting upward with the characteristic epicanthal folds. She looked like a purple raisin (her coloring a sign of needing oxygen) and she was the most beautiful baby I have ever seen.

Forever I will tell our Cleo how beautiful she is. Her almond shaped eyes that sparkle (our pediatrician later noted during her first appointment..."see they are like snowflakes. They are called Brushfield Spots. Aren't the beautiful?" ) Her tiny ears shaped like pink shells and her delicate feet that I can't stop kissing. These features that are associated with Down Syndrome are beautiful and I fell in love with all of her from the moment I saw her.

Some of my fears did come true. She needed to spend 2.5 weeks in the NICU due to pulmonary hypertension (oxygen support), polycythemia (blood disorder), and feeding issues. I wanted to breastfeed and received some lactation support but felt like most of the time the message was that babies with Down Syndrome don't breastfeed so don't get your hopes up. Cleo's latch was strong but she fell asleep before completing feeds, and we needed to help her organize to take a bottle in order to be released. A NG tube was inserted to help her transition, and we left the hospital with the plan to triple feed (offering the breast, then a bottle, then pumping AT EVERY FEED around the clock). Thankfully I found support through a group of women through DSDN who were breastfeeding and later a nonprofit, Julias Way, which provides support and resources to make breastfeeding children with Down Syndrome more accessible for women.

Finding support from other parents breastfeeding and baby-led weaning/self-feeding (which we were also told probably wouldn't work for Cleo because of her diagnosis), was another reason we wanted to share our story. This year I connected with another mom of a baby with DS and together we recently launched a project (@ableappetites) to share resources and support children with Down Syndrome in the transition from breast, bottle, or tube to solid foods. Building community and learning from other parents is so important to me. We are definitely stronger together.

I hope to continue learning from other parents and from people in the disability community. One of the most important but incredibly uncomfortable aspects of this experience is recognizing my privilege as a person living without a disability and beginning to unpack a lifetime of my own ableist views. What do I assume about people with disabilities (this can manifest as being overly nice or helpful, pitying, assuming someone with a disability can't speak for themselves or make decisions)? Many of these views are intertwined in our culture and so hard to recognize in ourselves! The shift into thinking what could be done to make the world easier/more accessible for people with disabilities has not come naturally to me. I believe it will be a lifetime of work, but having a child with a disability is helping me to see the person, not just their diagnosis.

Cleo has strengths and challenges like any other person. As a 14-month-old baby, she loves music, mealtime, dancing, bubble baths, hiking, and playing in the grass. She is completely, utterly adored by her siblings. She works hard in physical therapy and is so very close to crawling (!!) Her diagnosis does not determine her ability- just watch Chelsey Warner, a gymnast with Down Syndrome, flip across the room! It’s also true that her abilities don't determine her worth or value as a person (she is just as worthy if she never does a backflip). I know it’s pretty awesome to see people with Down Syndrome going to college, living independently, pursuing careers, falling in love, and doing all the things and my hope for Cleo is to be empowered in her life, whatever that looks like. All I really know is I look at my baby every day and ask,

how did we get so lucky?

To learn more about Cleo, follow along at @growingwithcleoon Instagram!

how did we get so lucky?

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