It’s no secret that 2020 has been a difficult year for everyone for obvious reasons. I am no exception, but this year has been especially difficult for our family and very few know the whole story. So this is it.
Back in May, I was admitted to the labor and delivery floor at a local hospital to deliver our baby girl at 18 weeks because two days prior, her heartbeat wasn’t found on the only ultrasound my husband was allowed to attend. The notes in my chart read ‘fetal demise’ which was technically correct, but I didn’t think of her as my fetus. I thought of her as Iris Faith, baby sister to Ellie, our second born, my daughter. Two weeks later and our experience would’ve been labeled as stillborn, but I’ve learned through this experience that labels mean nothing and grief is grief is grief.
We knew what was coming thanks to NIPT (noninvasive prenatal testing) that I secretly had done late in my first trimester with the sole intention of learning her gender early and surprising my husband with the reveal. What I got instead was a call from my midwife that I’m certain I’ll never forget.
It was early in the day and right at the beginning of the COVID-19 quarantine, so I was working from the patio in our backyard watching Ellie swing and play on her playset. I recognized the phone number instantly on my phone and felt my heart beat faster. This is it! I thought, She’s calling to tell me the gender! Just as quickly, my heart dropped.
“I’m so sorry to be calling you with this news, but we received the results from your NIPT testing, and unfortunately, your baby has screened positive for Down Syndrome.”
The rest of the conversation was a blur. I remember thinking, how could this be happening to me? I’m not even 29, this sort of thing is only supposed to happen in later pregnancies.
“You’ll be getting a call from Fetal Medicine in the next couple of days since your pregnancy is now considered high risk. They’ll do a diagnostic ultrasound to confirm the diagnosis. Do you have any questions?” My midwife asked, clearly sympathetic to the situation.
“Not right now, I’m kind of blindsided to be honest,” I responded, holding back tears. “Was the gender listed?”
“Yes! Baby is a girl.”
A girl! Ellie had demanded a sister and had only referred to the baby as a girl since we told her we were expecting. She would be delighted at the news, but I couldn’t help but grieve the child I had envisioned. I knew that, statistically, our baby would have a high probability of having a heart defect and would likely require physical therapy to help with low muscle tone. How would I even navigate parenting one advanced child and one special needs child? I knew from friends and family members with special needs children that it wouldn’t be a simple task, not that parenting in general is simple, but it would certainly be more difficult than what I had imagined when those two pink lines popped up on the test.
I had to sit with that news for 8+ hours because my husband’s job is dangerous and it wasn’t an option to share that news with him over the phone. In the meantime, I googled myself to death and read every article and medical journal imaginable about her diagnosis and NIPT. I chatted with a genetic counselor employed through the company that completed the testing later that afternoon who informed me that, thanks to my age, we had a 53% chance of our results being a false positive and for the first time all day, I had hope. She went on to explain what they would be looking for on the ultrasound and what my options would be if I wanted further testing. I took notes, I highlighted those notes, and I cried some more.
Since Phillip doesn’t know I’m even writing this, I won’t share his reaction but it was incredibly difficult to have to watch him absorb the news I’d been processing all day. We prayed together, we prayed over Iris, and while pushing Ellie on her swing, she told me, “My baby sister is so sad.”
We hadn’t even told her it was a girl. I should’ve known then something was terribly wrong.
Early the next day, I got a call from the specialist my midwife had mentioned and they had a 1PM opening for an ultrasound, but I would have to attend alone because of visitor restrictions put in place due to COVID. Cue even more devastation.
I knew after hours of research and my conversation with the SEMA4 counselor that they would be looking at Iris’ nuchal translucency, fluid that gathers at the base of a baby’s neck. Some fluid is normal, high levels are concerning, and even to my untrained eye, I knew as soon as my baby girl appeared on the screen that she undoubtedly fell into the latter category. At her gestational age, 3mm of fluid was considered high, but I watched the tech measure on the screen and my baby was nearly three times that. After what felt like an eternity in the cool, dark room, I was escorted into an office with a masked doctor who told me I should call my husband.
With Phillip on speaker, she gave us the muffled heartbreaking news that not only was our diagnosis correct, it was fatal. Thanks to the echoes of the tile and the mask making it difficult to understand her, Phillip didn’t quite catch what she’d said. In a nutshell, we were informed that our baby would not make it to full term because of the amount of fluid in her tiny body, something called fetal hydrops, and she would die of heart failure well before the 40 weeks mark. “I’m required to inform you,” she said, hands folded on her desk, “that you have the option to terminate the pregnancy. Since the fetus is still alive, no procedures can be done at a hospital, you’ll need to go to an abortion clinic if you choose that route. Otherwise, you will come in for biweekly ultrasounds so we can monitor the fluid until the heart stops, at which point you’ll be admitted for induction. I would recommend that you have the products of conception tested to confirm the Trisomy 21 diagnosis.”
I felt so numb. Products of conception? I had just witnessed my baby girl wiggling her tiny fingers and legs on a television screen just down the hall. Termination? Abortion clinic? I had a 53% chance of a false positive when I walked in and I walked out knowing my baby would die.
Over the course of the next 5 weeks, I had 4 additional ultrasounds and Iris’ fluid steadily increased. The first 10 minutes of each appointment were pure torture wondering Is today the day that I won’t see her heart flutter? The week before my induction, the specialist told me they would make an exception and allow Phillip to attend the next appointment and I knew I didn’t have long left with my sweet girl. I’d just started to feel tiny movements when we got the news about her diagnosis right at 13 weeks, but those became lesser and lesser between each appointment.
The appointment that Phillip was allowed to attend (which staff questioned the second we walked through the door) fell on May 13, five months before her estimated due date, and it was the shortest of all. The ultrasound tech, one I hadn’t met before, pulled Iris up on the screen and we saw only stillness.
“I’m sorry guys, I’m not seeing a heartbeat. Let me double check before I go get the doctor to verify.”
My mask was already dampened with tears before I even knew they were falling, and it only got worse when Phillip asked, “Can you show me her face?”
He’d only been allowed to attend the initial ultrasound to confirm the pregnancy when Iris still looked like a gummy bear. Difficult as it was to go alone, I had at least had the opportunity to see her alive, waving and yawning on the screen before me. Phillip, on the other hand, hadn’t and would never get to see her alive this side of Heaven.
After a few minutes and a handful of last photos, we were escorted into the same room where I was first given the news, but this time it was to discuss induction and funeral arrangements. My initial fear when my midwife told me Iris had screened positive for DS was that I would eventually bury my child. I had no idea how quickly that nightmare would come into fruition.
During the wait for our induction appointment, my mom was able to locate a nonprofit out of Cincinnati who caters to families who have experienced or are anticipating pregnancy or infant loss called Heaven’s Gain. We overnighted a casket made specifically for second trimester losses lined in pink baby blanket material so that we could give our girl a proper goodbye once she made her arrival, which came just two days after no heartbeat was found at my appointment.
Iris Faith Cooper was born at 9:46AM, May 15, 2020 weighing 7.8 oz and 8in long. The labor and delivery nurses swaddled her and gave us time to spend with our baby. Despite the swelling from the fluid she’d retained, it was clear that, while her sister is a clone of Phillip, Iris looked like me. She had my nose & mouth, but her feet were carbon copies of her dad’s, and we spent the day marveling at her tiny fingernails and ears.
During the 18 weeks I carried her, specifically the 5 weeks between her diagnosis and death, I spent a lot of time mulling over what her birth would be like in comparison to Ellie’s. Ellie came into the world screaming bloody murder, Iris would be still and silent. Ellie locked eyes with me when they placed her on my chest, Iris’ eyes hadn’t fully formed and hers would be closed. Ellie came home in a pink flamingo newborn outfit, Iris would later be picked up from a local funeral home already tucked away into her tiny casket. Despite the weight of all that knowledge, I felt pure joy when I looked at my baby’s face and I’m grateful for the time we were able to spend holding her and memorizing the details of the tiny person we’d made and lost too soon. The grief didn’t fully set in until it was time to leave.
Thanks to a special cooling unit bed, Iris was able to stay in the room with us right up until they discharged me. Five minutes before we left, a nurse came into the room and explained that she would be taking Iris.
Let me tell you, in all of the loss and suffering I’ve experienced, nothing compares to the pain of watching someone wheel my baby away to the morgue. Nothing compares to the emptiness I felt when we left the hospital without a baby and instead a little black box full of Iris’ only mementos. Nothing compares to watching your husband cover your child’s grave while you hold her crying older sister. Nothing compares to the anger and hurt I’ve felt since that initial phone call.
Today, October 13th, was Iris’ estimated due date. I should be eating popsicles in labor and delivery, anticipating the agony of contractions and the arrival of a healthy, live baby girl. Instead, I’ve spent the morning looking at ultrasound pictures and typing this blog because I’ll be damned if all of this loss was for nothing. If I’ve learned anything through this experience, it’s that it may take a village to raise a child, but it takes an even bigger village to survive the loss of one and if sharing Iris’ story makes even one other grieving mother feel not so alone, then I’ll have honored her memory the best way I know how.
October is both infant/pregnancy loss and Down Syndrome awareness month, which I find painfully ironic since both of those made up Iris’ story. It seemed appropriate to address both on her due date. One in four women will experience pregnancy or infant loss, and I am that one. Thirty-one percent of Down Syndrome pregnancies end in miscarriage or stillbirth. But Iris and I are not just statistics. Women should not have to suffer through such a tremendous loss in silence just because it makes other people uncomfortable or they just don’t know how to respond. I am grateful that my amazing support system has been there with me through all of this. They’ve cleaned my house, brought us food, watched Ellie, and most importantly, they’ve prayed for me and with me since the beginning and continue to do so.
About a month after we lost Iris, a friend at church came up to me and essentially asked how I was still standing after such a tremendous loss. To be honest, I was still on auto-pilot at that point, but his question made me think… what exactly was the difference?
I had always assumed that the loss of a child would be the absolute end of me, and in many ways, it was. I’m not, nor will I ever be, the same woman I was before Iris. A loss that big tends to shift your priorities and perspectives in a way that nothing else can, and at the same time, that loss made me depend on God in a way that I’ve never had to before this year. And that is the difference. I rest knowing that my goodbye to Iris is temporary because of my faith, and one day I’ll get to meet her face-to-face where heart conditions are of no concern. I’m still standing because He is holding me together.
Matthew 11:28
Married with Furchildren 