Emily* has two children. She said she also lost two children.
"In 2013, my husband and I were pregnant with our third child. Everything seemed to be going great. We went in for our 13-week sonogram and there just wasn't a heartbeat anymore," Emily said.
Up until that moment, it hadn't occurred to Emily something like that could happen to her.
"I did feel pressure that I should just get over it, that I wasn't allowed to grieve outwardly. I just had to keep it to myself," she said. "You don't really know what it's like until you go through it personally. I definitely went into a major depression."
But she kept her depression private, "just kind of put on a happy face and tried to continue living life."
Emily became pregnant again, made it past that ominous 13-week period and everything seemed great once again — until the next week.
"We went in for our 14-week sonogram and I was just looking for that fluttering. That's all I wanted to see was that fluttering on the sonogram screen and it wasn't there," she said. "I (sigh) just kinda looked at my husband and, like, I don't know how we can do this again. I can't do this again. I can't go through this again."
And this time hit her even harder.
"I just knew for a fact in my heart that I could not go on like I did with the first one," Emily said. "I couldn't put on a happy face anymore. You know, 'Oh, yeah, I lost the baby. But you know, I'm okay.' I couldn't pretend like that anymore."
Each year, more than 200,000 New Yorkers give birth and most of those little ones come into the world without complication. But 25% of women lose a pregnancy — and it remains a very difficult and taboo subject.
"One in four women will lose a pregnancy and we just don't talk about it," said Darcy Dreyer, director of maternal health for the March of Dimes in New York State.
Lindsey* also knows about difficult pregnancies. She nearly lost her own life with her first child — and didn't feel able to talk about it.
"Your baby comes and everyone pretty much stops checking in on you. Everyone's like, 'Oh, the baby," Lindsey said. "People just tell you, 'Oh well. You'll get the baby blues. And it's hard, you know. And you don't sleep.' No one wants to hear about the awful journey you went through to get there. It just bums them out. No one is like, 'I hear you almost died.'"
She said pregnancy is supposed to be a happy time, but it was one hurdle after another. Lindsey and her husband didn't have health insurance at the time, and had to work two jobs each to pay the out-of-pocket costs that came with a high-deductible plan they found through the New York State Marketplace.
Then came the medical complications.
"Some women get what's called cholestasis of the liver, which ends up putting your baby in danger. The disease often causes stillborn babies after week 38," she said. "In my second trimester, I started having gallstone attacks throughout my pregnancy. It took probably four or five attacks to identify what was actually happening. To control that, I also had to switch to a vegan diet."
At the end of what felt much longer than nine months, Lindsey was hospitalized with more complications over five days before her new baby girl finally arrived — through a difficult cesarean delivery.
"And then she was there. She came out great and I came out okay," she said. "And they were like, 'Do you want to hold her?' and I was like, 'No, take the baby.'"
Lindsey said she and her husband didn't have the typical "serene, admiring the baby moment" and found it difficult to process the whole experience, plus being new parents, even months afterward.
"This is really treatable. We know what to do. There are experts in town, trained professionals who can help. No mom should suffer in silence."
"Depending on where you look, you'll see statistics that range somewhere between 1 in 5, 1 in 7, 1 in 8 women experience a perinatal mood and anxiety disorder (PMAD), and 1 in 10 fathers," according to Jennifer Urban, a licensed clinical social worker whose private practice specializes in what's more commonly called postpartum depression. "So that statistic is pretty high."
She said postpartum depression doesn't feel the same for everyone, and should be recognized as much more serious than just the "baby blues." Urban co-founded the WNY Postpartum Connection to expand the information and support available after a birth, because recovery from a complicated pregnancy may take months or even years.
"We've tried to create community among the providers to be a network where we can rely on one another," she said. "So for example, if my schedule is really full, I don't want to tell that person I'll see you in a couple of weeks, right? I can now reach out to this network and say, 'Who has an opening for this person?' And then I can give that information to the mom."
It wasn't that long ago, healthcare providers didn't have the knowledge or resources to help families through the experience.
"I meet older women, maybe women in their 70s," Urban said. "When I specifically ask them about pregnancy or the postpartum period, what they had was postpartum depression, but nobody was screening for that. Nobody knew what that was. They just suffered in silence."
That's beginning to change, as data becomes available and awareness increases. One large national study of 1.8 million pregnancies among commercially-insured women by Blue Cross/Blue Shield found postpartum depression surged almost 30% between 2014 and 2018.
"One of the problems with that, too, is that we know that about 75% of women who experience a perinatal mood or anxiety disorder are not receiving treatment for that," Urban said. "And women of color are more likely to experience postpartum depression, but less likely to receive treatment."
"They're under constant stress from racism and implicit bias, not only in health care, but in systems across the board," Dreyer said. "The lifelong effects of stress on your system makes you more susceptible to depression following pregnancy and you're less likely to access that care that might help you manage that postpartum depression. I could pull up a spreadsheet right now and show you zip codes where as the percent of the population of color increases, their health outcomes decrease."
To improve outcomes for New York families, Dreyer said the March of Dimes is among the organizations advocating for abill — passed in the state Senate — that extends postpartum care for women on Medicaid to 12 months. Medicaid covers nearly half of births in the U.S.
"Many who are vulnerable are utilizing Medicaid health insurance and currently you drop off 60 days postpartum," she said. "So if you don't get in for your postpartum visit or access any mental health supports during that time frame, you're out of luck."
Emily found postpartum care through a support group of what see calls "amazing ladies" with whom she's been friends for eight years now.
"Made me realize it was okay not to be okay. I wasn't the only one going through this. I didn't have to go through it by myself. Everyone's different and there's no right or wrong way to grieve," Emily said. "And because of that, there were friends of mine that I never knew had miscarriages and they reached out to me."
Lindsey found clarity through one-on-one counseling.
"I didn't even know it was an option and it turned out to be an incredible option," Lindsey said. "I loved my counselor because she was a mom, too. And I felt like she didn't have any ulterior motives, where, you know, I feel like your family just wants you to be better, so they'll agree to anything that you say. Also, I felt like everyone was talking about the baby. My counselor was like, 'You need to take care of yourself and that makes you better to take care of your daughter, take care of your family.'"
Lindsey is expecting another child in March — and the pregnancy is going well.
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*WBFO used only first names of the mothers for their privacy. October is Pregnancy and Infant Loss Awareness Month. Below are some links to resources for families and providers wanting more information and support:
