Lydia's feet (Courtesy of the author)
Lydia’s feet (Courtesy of the author)

For eight months, we pictured her — pondering names as we crunched potato chips, exclaiming over sleepers at secondhand stores, spinning skeins of plans.

A bright-eyed baby who would grow into a pig-tailed toddler and tenacious teenager. My niece. We thought she was a sure thing.

Then, before she ever got to take a breath, she died.

My sister was at a routine appointment when her doctor couldn’t find a heartbeat. The next day, as November rain slammed the Columbus, Ohio, hospital where a year earlier she’d given birth to her son, she pushed out her stillborn baby girl.

Lydie was perfect. Ten darling fingers, a dollop of a nose, big flipper feet just like her mom. But her eyes were closed, and her 3 pound, 10 ounce body was still. Every time I think about that day, every time her face flits into my brain, I feel sucker-punched.

Stillbirth seems inconceivable in the 21st century. But, it turns out, one in 160 American pregnancies ends in stillbirth. Each year, more than 26,000 babies die in utero, in what is supposed to be the safest place. That’s 2,000 more than infants who die in their first year of life.

“This is a public health crisis,” said Lindsey Wimmer, whose son, Garrett, was stillborn in 2004. “Twenty-six-thousand individuals dying in the United States is notable, of anything.”

Yet stillbirth is almost invisible.

“I am a horror story,” Elizabeth McCracken writes in “An Exact Replica of a Figment of My Imagination,” a stillbirth memoir my sister read twice before passing to me, “an example of something terrible going wrong when you least expect it, and for no good reason, a story to be kept from pregnant women, a story so grim and lessonless it’s better not to think about at all.”

Few doctors research stillbirth. Efforts to stop it are minimal. Since the middle of last century, stillbirth rates have barely budged in the United States.

“Why in the world is this still happening?” asked Janet Peterson, an Iowa state senator whose daughter, Grace, was stillborn in 2003.

[I had a miscarriage: talk to me]

Doctors know of some risk factors. Black women are twice as likely to have stillborn babies as white women are. Smoking and drug use also contribute, as does obesity and age.

My sister is white, fit, healthy and young. She does not smoke, she didn’t drink, she didn’t have high blood pressure or any other risk factor. No one ever mentioned the possibility of stillbirth.

Doctors say they don’t want to make pregnant women paranoid.

But pregnant women should know the stakes. We know the chance of miscarriage is terrifyingly real. So we steel ourselves for calamity in the first trimester. Then we pray for no abnormalities at our 20-week ultrasound. After that, pregnancy is supposed to be a series of heartburn and hope, preparation for the little miracle who will steal your sleep and elate your heart.

I never knew of stillbirth until my cousin’s son died in May 2013, days after his due date. As occurs with about half of stillbirths, his parents still don’t know why. We thought there was no way could it happen again, in our family.

That’s not how it works, though. In the days following Lydie’s death, my sister and I learned of other dead babies. The children of family friends, friends’ moms, women I told at the gym.

All these senseless, silent deaths. All this pain, blindsiding mothers and fathers and aunts and uncles and grandparents and siblings.

Lydie was the daughter my sister and her husband had so longed for. My nephew’s little sister.

She was to be a sister-cousin to my own daughter, who would share her secrets and her trundle bed. They would wear matching dresses. My sister and I texted about nursery colors and a frame for a print proclaiming, “You are my sunshine.” Now that print sits on my sister’s mantel, next to Lydie’s urn.

All that love. All those dreams — decimated.

When Lydie was delivered, the doctor said she likely had an umbilical cord accident, which kill thousands of American babies annually. The number isn’t exact, in part because autopsies aren’t mandated. But according to the Eunice Kennedy Shriver National Institute of Child Health and Human Development, more babies die of cord accidents than from high blood pressure or mother’s health issues, including diabetes.

Yet doctors routinely test for those. They don’t typically examine the cord.

Why not?

For one, the American Congress of Obstetricians and Gynecologists, which sets standards for practice, doesn’t mandate it. Health insurance generally doesn’t pay for it.

For another, about 30 percent babies born safely have cords around their necks, said Dr. Rebecca Starck, chief of regional obstetrics for the Cleveland Clinic. Extra tests won’t necessarily find problems – and they may signal false alarms that lead to unnecessarily premature deliveries.

But shouldn’t we err on the side of more information?

Under current standards, pregnant women regularly have two ultrasounds, total. Doctors gauge the baby’s development by checking moms’ bellies with measuring tape and listening to the baby’s heartbeat. But that shows only that the baby’s heart is beating at that moment.

More could be done. Doctors could do more ultrasounds, examining the placenta and cord. They could use Doppler imaging to check blood flow. They could do non-stress tests to see if babies’ heart rates are decelerating.

The tests aren’t guarantees, of course. But I feel like the medical community dismisses stillbirth as something that just happens. A personal tragedy, rather than a medical crisis.

“To be crass, dead babies don’t cost anything,” Wimmer said. And because babies are not legally considered people until they’re born, they’re hard to advocate for.

A new federal law might help. The Sudden Unexpected Death Data Enhancement and Awareness Act requires states to collect data on stillbirth and sudden unexplained child deaths, as well as to better educate the public. But the law has no money attached, so Peterson worries it won’t do much to help stem the deaths.

Dr. Jason Collins, one of few American doctors studying cord accidents, also is skeptical, and baffled. “No one will talk about this topic,” he said. “These are babies who didn’t have to die.”

Peterson and four other Iowa baby-loss mamas are tackling stillbirth on their own, with a campaign called Count the Kicks. The program urges women to measure the activity of their babies daily in the third trimester, with a smartphone app. Research suggests that changes in fetal movement – either more or less active — could signal distress.

Since the program started in 2009, 85 percent of Iowa doctors have signed on, and stillbirth has dropped 26 percent statewide, Peterson said. Starck and Collins also advocate kick counts. My sister was never advised to do them.

Doctors might breeze through the concept with a simple question of “Lots of movement?” They may not be aware of relevant research.

Wimmer, a nurse practitioner in Eden Prairie, Minnesota, is working to increase research and awareness with her nonprofit, the Star Legacy Foundation. After Garrett’s death, she looked up stillbirth in her old obstetrics nursing textbook, and found one paragraph on it.

“We have the tools to prevent a lot of these losses,” she said. “So much of it is not rocket science. It’s better monitoring and better identifying those pregnancies that are showing signs of risk, and managing them appropriately.”

Sadly, all of the information won’t bring Lydie back. We will always have a candle instead of a high chair at family dinners, framed footprints instead of school pictures. A hole in our family where she should be.

But I hope the facts save someone’s baby, someone’s plans and dreams.

Laura Johnston is a mom of two and a community editor at Northeast Ohio Media Group in Cleveland. She and her sister were once a matched set. Follow her on Twitter at @lauraejjohnston.

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