Finding Hope in Loss: The Story Behind Carry Your Heart

On Sunday, April 21st, 2013, in a fit of second trimester energy and the hopeful expectations of a woman pregnant for the first time, I make the kind of dream board collage I used to create in middle school. But where Brad Pitt and our fantasy beach house used to occupy serious real estate, this one is packed full of the smiling faces of family magazine models, happily depicting the life I imagine my daughter and I sharing.

Later that night, my husband and I curl up on the couch to watch the movie, “Seeking a Friend for the End of the World.” The sinking feeling in the pit of my stomach doesn’t go away as he clicks off the TV, and I realize it’s been hours since I felt her - our first baby - kick.

On the morning of Monday, April 22nd, 2013, I try drinking orange juice and cold water; eating something sweet. The internet tells me that these things will perk up an inactive baby, and I tell myself that she’s just being quiet - that she’s in a position where I can’t feel her movements well. At 27 weeks pregnant, I haven’t even reached the 28-week threshold for beginning the kick counts that would clue me into something being wrong.

When nothing changes, a quick call to my nurse suggests that it’s better to be safe than sorry. Leaving my sleeping husband at home, I plan a quick trip to the hospital - sure I’ll be later forced to explain the visit away as having become “that woman” who overreacts and sees shadows where none exist.

My favorite song comes on the radio on the way. A good sign, I’m sure.

The triage tech orders me into a gown and leads me to the bathroom for a urine sample. I’m calmed by her seeming nonchalance, even as I want to plead with her to speed things up - to get out the ultrasound wand and get us to the point I’ve imagined where I’m the nervous new mother, overreacting. When I’m finally on the table, we’re surrounded by women in active labor as her demeanor noticeably shifts. “Let me know when it’s time to panic,” I ask quietly, as she excuses herself to find a more senior doctor.

I already know.

My once-active girl is still on the monitors. There’s peace, but no life.

I hear the words, “We can find no signs of life,” but I can’t process them in a way that makes sense. I still look and feel pregnant in every way, but the reality that a life has lived and died inside of me is something I can’t comprehend. The logical, rational part of my mind that accepts that our daughter is gone is the same part that leads to the next inescapable conclusion - that, ready or not, living or dead, I’m about to have a baby. I am terrified.

I steel myself to call my husband, to wake him from a deep sleep after a night shift with devastating news. My husband, who was just weeks away from leaving his job to become a stay-at-home-dad to our daughter.

Though we’re given the option of letting “nature take its course,” we make the decision to begin induction immediately. After we’re moved to our room, we somehow summon the strength to call our parents and tell them they’ve lost a grandchild they never got the chance to meet. In a flood, the memories I’d already made for my daughter - which I’d naively glued in a collage just 24 hours before - fill my mind.

She would have loved going to summer camp, like me.

She’d share a love of reading with her father and me - I’d catch her up after bedtime, sneaking a few last pages of Harry Potter, the Lord of the Rings and our other favorite childhood treasured series.

She’d have a sarcastic sense of humor covering a more vulnerable side - again, like her father and me. When things got stressful, I’d pull her out of school to play hooky and get pedicures together.

I have too much time to reminisce about memories I’ll never actually make. Induction isn’t a quick process, but our stay is complicated by doctors who mismanage our care. We’re given the induction protocol for mothers of living children, for whom toxicity is a concern; administered by interns who don’t know enough to question the orders of the attending physician using out-of-date methods. It’s nearly a full day before a shift change finally brings us a doctor willing to speed things up with heavier doses of misoprostol.

Throughout what becomes a multi-day ordeal, I’m offered any and all of the pain relief options I can think of. “You shouldn’t have to feel any more pain than necessary,” the nurses and social workers tell me. The words ring hollow when, as labor finally kicks in, the order for my epidural isn’t delivered to the anesthesiologist.

Labor intensifies. The nurse on call brushes off our questions. She’s sure someone will be there soon, and rather than ask for an update, she buries herself in her computer. We aren’t given the dignity of any ongoing monitoring; I don’t know what’s happening with my body. At seven months pregnant, I assumed I’d have more time to learn about labor and delivery. And now, in the moment, there’s nobody to talk me through what I’m facing or to coach me - unmedicated and scared - on what to expect.

It is a very dark place; I am fully dilated when I receive my epidural. A half-hour later, I deliver our stillborn daughter.

I hold her. In the 20 minutes I spend with her, in the sacred space we create of mother and child meeting for the first and last time, I try to memorize every detail of her, from her dark hair to her impossibly tiny fingers and toes. She is beautiful, perfect; 20 minutes feels too short, but I know in the deepest places in my heart that there is no amount of time that would be enough. How do you fit a lifetime of hellos, goodbyes and I love yous into such few, precious moments?

We name her Lena Grace.

Leaving her at the hospital - for good - is one of the hardest things I’ve done in my life. After the trauma of loss and the devastation of our mismanaged care, it is the aching finality of empty arms that breaks me. As I walk away from my daughter and past the hospital’s nursery, the deepest parts of my biology demand that I hold my baby close to me.

The failure and finality I feel in that moment is overwhelming.  

Things don’t improve once we leave the hospital. We arrive at our daughter’s burial, only to find that the hole for her cremation urn hasn’t been dug. We’re told to return four hours later, after another burial takes place - the grieving family of that child is already on the way. The gangly young waiter at the Buffalo Wild Wings across from the cemetery gives us free queso dip as we drink tall beers and pass the time (for his benefit, we’ve left our daughter’s urn in the car).

I send the small portion of her ashes I’ve kept across the Atlantic to a UK-based artist who will craft them into a pendant. I ask for glitter and purple flowers - the color that has come to represent our daughter in our minds. The result is something I’m still too embarrassed to show anyone.

When we were pregnant, we laughed at the idea that our daughter might share our love of practical jokes. It’s not hard to see this comedy of errors as evidence that we were right.

As we adjust to our new status as bereaved parents, we begin to learn more about stillbirth.

  • Far from being something that happened only in pioneer times, an estimated 26,000 US families experience stillbirth (a loss after 20 weeks gestation) a year, according to the March of Dimes.
  • Incredibly, more than 500,000 US families experience miscarriage (the loss of a fetus before 20 weeks gestation) each year. By some estimates, 15-20% of all confirmed pregnancies end in miscarriage.
  • Roughly half of the couples who experience stillbirth will never receive a medical explanation for why their children die before they’re born, even if an autopsy and other post-mortem tests are performed.

Guess which camp we fall into.

Receiving no solid diagnosis is a mixed bag. There’s nothing definitive that tells us we shouldn’t try again for a healthy pregnancy; though, at the same time, there’s nothing we can do to increase our odds of success in the future. The only advice we’re given is to grieve, to heal and to wait until we feel we’re ready to move forward.

Two months after our loss - the sharp edges of my grief dulled - I’m headhunted for a marketing director position at a software company.

A software company in the funeral industry.

I go back and forth with my husband. It’s a great opportunity for me professionally, but can I do it? Can I spend my days surrounding myself with the intimate details of death and disposition in order to connect with the company’s funeral home customers?

When I look at the number of places I’ve been let down on my own journey through grief, it’s something I can’t not do. It’s a selfish conceit, but it’s hard not to think that maybe there’s some small way my voice and my experiences could be used to help ease the suffering of another woman walking the road of pregnancy loss hell.

I accept the job two months later, and two weeks after that, I’m pregnant again.

Pregnancy after loss is a harrowing, lonely road. Even the extra monitoring of high risk pregnancy management can’t guarantee nothing will go wrong; when you didn’t get answers the first time around, you don’t know what you’re looking for the second. Every bump, every twinge, every bad feeling is ominous; nine months feels impossibly long.

Burying myself in work helps to a point; less so on the days when that work involves reading stories of heartbreaking loss to share on the company’s social media pages or previewing the obituary announcement of a deceased child on a funeral home's new website.

After induction two weeks early, our living son comes kicking and screaming into the world; lungs full of life - a tiny ball of energy and need. The intensity of that need brings about the decision to move closer to family; our relocation home takes me out of professional funeral industry work.

Two weeks after the second anniversary of my daughter’s death, a call for submissions pops up on the email newsletter of the coworking office where I’m stationed - a chance to win up to $10,000 in the Michigan Women’s Foundation Business Plan & Pitch competition.

On a whim, I throw together a two-page concept paper for an idea that’s been knocking around in my head since I opened the box containing the ugliest piece of jewelry I’d ever seen: a memorial jewelry and gift line serving pregnancy loss parents and the loved ones who support them.

The real truth of pregnancy loss is that nobody wants to talk about it. For the parents involved, it’s painful. When something as simple as the question, “How many children do you have?” becomes the trigger for fresh tears, you learn to quickly size up a situation and evaluate whether or not that well-intentioned stranger really needs to know all the details of your discomfort.

For the world at large, it seems like an intensely personal subject that seems best left unspoken.

It’s understandable, but the truly unfortunate part is, if our losses aren’t spoken, the need for products and services supporting our community is never realized.

Corporate bereavement policies don’t always encompass recovery from miscarriage or stillbirth, forcing rawly-wounded parents to use up their existing vacation time or to face casual conversation with those who haven’t yet learned about the loss. Hospitals may not have garments small enough to swaddle a baby miscarried at 18 weeks; diapers small enough to prepare a 26-week stillborn baby to be held by his parents.

And in my case, it meant that the treasured piece of memorial jewelry I’d hoped to find and wear daily - that spoke to the unique circumstances I faced as a pregnancy loss parent - simply didn’t exist.

In my application to the business plan competition, I stated clearly my intention to change this. To speak as a voice for my community; supporting it with the products I wished were available to me, while at the same time advocating for the changes that could prevent even one woman from suffering unnecessarily the way I had, drawing on the connections I’d built within the funeral profession.

I called my proposed company Carry Your Heart after the line in the famous e.e. Cummings poem that reads, “I carry your heart with me. I carry it in my heart.” It’s a sentiment that’s meaningful to me for two reasons.

First, there’s science that suggests that fetal cells cross through the placenta into their mothers’ bloodstream, remaining there following a pregnancy - and potentially living on in that way for decades.

My daughter may have never taken a breath, but as I live, so does she.

Regardless of which cells landed where, I remain my daughter’s advocate in this world. I carry her in my heart - perhaps literally and definitely figuratively - and in doing so, my legacy becomes hers. Any opportunity I have to improve care for my community, as well as what I choose to do with those opportunities, is not just a reflection on me, but on my daughter as well.

Weeks after my business plan competition entry, I was selected as a finalist; several months later, I walk away as a winner, with a comically large check for $2,500 and the encouragement of the judges’ panel to go out and be the change I feel is so needed.

What you see here, on the Carry Your Heart website, is the culmination of months of incredibly hard work. Of connecting with jewelry designers who could bring my vision of jewelry featuring hands carrying hearts to life, and of asking thousands upon thousands of questions to patient people who helped me find the answers I needed.

(Turns out, launching a jewelry and gift company is actually pretty tough when you don’t know anything about jewelry or gift basket design!)

This website and its mission will continue to grow and evolve, but every step will be taken in service of the company’s core commitment to improving care for pregnancy loss parents - in whatever shape or form that takes.

Together, we will fight to make our community’s needs better understood by the people and agencies that play active roles in the loss process.

We’ll challenge the status quo that would rather not hear our losses spoken about in public - especially where they limit the policies and support mechanisms we need from our doctors, employers, funeral directors and more.

Above all, we stand to say that, pregnancy loss parents, we hear you. Your children are real, and they are loved. You are not alone, even as the process of grieving a baby the world never met can leave you feeling like you’ll never be whole or normal again. Whether your loss happened recently or years ago, we are here to support you and the child or children you carry in your heart.

“I carry your heart with me. I carry it in my heart.” -e.e. Cummings