Humans in Healthcare: Chapter #9

Healthcare professionals are patients, too

By: Amy Story

7 years ago, almost to the day, I experienced my first miscarriage.

I was nearly 12 weeks pregnant but intuitively knew that something wasn’t right as I hadn’t been feeling pregnant for some time. When I started to experience spotting, I called my OB’s office immediately. After a physical exam, my OB met my scared eyes with kindness, but directness.

“Amy, we don’t know until we know, but it is very likely you are having a miscarriage. Let’s get an ultrasound right now to explore”.

*****

The weight of this moment was heavy, built on the back of years of indecision of whether or not I wanted to have children. Or if I even could.

I grew up navigating the world with a brother with Down syndrome (when a person is born with an extra copy of chromosome 21, also known as Trisomy 21) and Autism, just 18 months younger than me. Unlike most individuals with Down syndrome, he is non verbal and low functioning, requiring 1 on 1 assistance for most activities of daily living.

I didn’t have a “normal” childhood. He would often run away and into the middle of the road we lived on, cars speeding down the winding road, unable to see a small child seated crisscross in the middle of their path. It was terrifying, prompting the need for him to be in line of sight at all times. He would roll down the car window and throw his shoes into speeding traffic. He would run toward anything that was glass, gleefully throwing it and cackling as it shattered in tiny shards everywhere. And he would bang his back on the door, the repetitive motion soothing him, every night, all night, for years.

Given his impulsivity, to say I lived a hyper vigilant childhood would be an understatement. Though everyone was doing the best they could, I became an adult long before I was child. Most of my early years were spent caregiving.

So, I entered my own childbearing years with crippling anxiety about the possibility of bringing a child with a disability into the world. Not because I wouldn’t want them, but because I knew what it might entail and…I didn’t know if I could endure it (yes, I still carry a lot of shame regarding this. Please don’t judge).

I also questioned if I could even have a healthy pregnancy after starving and abusing my body for years. Would the change in my body cause a relapse of my 10 year struggle with Anorexia? I had maintained active recovery for almost 9 years at this point, but I’d never been pregnant before. I had almost met death once. I didn’t want to put myself in a position to face it again.

Arriving to the idea of having children was a process, but I had arrived to it and now here to the present: spotting at 12 weeks pregnant.

*****

I wasn’t able to have the ultrasound at the OB’s office because they were booked full of other appointments that day and couldn’t “squeeze me in”, so I had to drive across town to a radiology facility, pounding bottles of water along the way, as was required for the transvaginal ultrasound.

I was so uncomfortable in the ultrasound exam room, from the spiraling anxiety and what ifs, to the fullest bladder I’ve probably ever had.

Ironically, the ultrasound tech was around 35 weeks pregnant. Her round belly, my barely showing belly, the bookends of a spectrum of the same experience.

We couldn’t look each other in the eye.

Really, God? I said to myself. Is this a joke?

She finished the ultrasound and left to speak with the radiologist, returning what felt like years later, to hand me the phone. “It’s your OB, she said. He wants to speak with you”. My heart had already sunk. I knew. But I answered anyway.

Kindly, but directly, he said, “Amy, I have some bad news. What you and I discussed as a possibility is true. It looks like the fetus stopped developing at 7 weeks and is no longer viable. I am so sorry this is not the outcome we wanted. And I want you to know that nothing you did or have done caused this to happen. I’m very sorry.”

I sniffled uncontrollably, a pregnant pause. White to black to red to silence.

“I’d like to talk about next steps. You could have a dilatation and curettage (D&C), take oral medication, or wait. What would you like to do?”

As a medical provider, I knew rationally what my choices were, but in that moment, I was irrationally clinging to something other than decisions. I also knew rationally that miscarriage is common, occurring in 1 in 4 women, with chromosomal abnormalities being a leading cause. These are common statistics shared to miscarrying women, but I can guarantee that no woman wants to feel like a statistic in her time of grief.

I couldn’t answer. All I could do was sob as the pregnant ultrasound tech looked at her feet, silently witnessing my grief. In the space of her room, she held the space for me.

My OB was able to be emotionally present enough to meet me where I was in that moment, which was to not have an answer on next steps, rather, to sit in my grief.

And he let me, telling me that he was going to call me later that night to talk through options and we could decide then.

True to his word, about 7:30pm that night, he called my cell phone and we talked through options, deciding upon a D&C. Given the after hours call, he personally arranged with the hospital staff for my procedure to happen the following day.

I’ve been a caregiver my entire life, going above and beyond for people and patients, but that day, I was the one who was being cared for.

*****

The day of the procedure, I was physically and mentally worn down. The nurse had difficulty placing my IV as I was dehydrated from constant crying and not eating or drinking anything due to the procedure. She told me she’d have to page another nurse to insert the IV. “You’re really dry” (medical speak for dehydration), she said in a cold, snarky, and shaming tone. I silently begged her not to blame me for something I couldn’t control. I felt the coldness of the sterile hospital room, but I didn’t expect it to come from a human interaction in my time of pain.

The pre-op nurse treated me with kindness and compassion. She shared that she had miscarried 5 times before she was able to have her first child. “Have faith, she said. You’ll be back one day, on different terms”.

My OB came to see me just before I was rolled into the OR. Knowing my history, he told me he was going to send pathology for chromosomal abnormalities. This is not typical standard of care, usually only tested for after a history of multiple miscarriages. Why do we make women suffer just to get answers?

He also said I’d be back one day on different terms.

Is hope something we should promise? I really don’t know. I acknowledge it isn’t the reality for some.

*****

“Amy, the pathology showed the fetus had trisomy 18. It was a boy. Trisomy 18 is rarely survivable. Had he survived, he may not have had a quality of life”…

Really, God? Is this a joke? I heard myself ask again.

The juxtaposition of my first child, a trisomy, to my living brother, a trisomy, to the irony of my then clinical job, working with patients with developmental disabilities, many of them with trisomies.

The recurrent surge of grief and guilt and love, of not wanting a child with a disability, yet fiercely loving my brother with a disability, perfect in his own skin, and lovingly caring for those with disabilities, perfectly their own.

Leading up to my D&C, I penned this in my journal:

The weight of love and grief is heavy, even 7 years later.

*****

A few weeks after my D&C, the hospital where I had the procedure sent me a sympathy card and invited me to a ceremony they hosted every October for grieving parents of miscarried and stillborn babies, complete with a headstone of remembrance.

We don’t always receive compassion from the systems and institutions of medicine. Many times we are met with discharge paperwork and a bill. But this hospital definitely got it right. I wish this kind of compassion for everyone. I know I’m not alone in that wish.

*****

Almost a year to the day of my D&C, I arrived to the same hospital, this time to labor and delivery after my water broke. My healthy infant son born 17 hours later, carrying the name of his brother who came before him as his middle name.

My OB and the surgical nurse were right that day of my D&C. I did come back, on different terms. Different in every way. Deeper sorrow, deeper pain, deeper love, deeper joy.

There’s a reason why I made up the term surthrivor, because it holds such significance in my story, though this is just one part of it. Just like my miscarrying self and the pregnant ultrasound tech, it’s a continuum, bookends on the spectrum of the same experience.  

*****