Breaking The Silence On Pregnancy And Infant Loss, Shore Group Offers Aid, Support

It was Easter, the most powerful symbol of rebirth. The woman sat on the bed, blankets pulled up, watching her daughter going through the kitsch and candy in her Easter basket, her husband still snoring beside her.

She ran her hand across her belly, smiling at the thought of the life emerging inside her, then glanced at the clock on the bedside table. It was time to get up.

"We need to get moving," she said, nudging her husband from his slumber. Brunch with his parents was in the offing, and she was hungry.

She headed into the bathroom to take a shower ... and discovered that everything she had thought, everything she had cherished in those moments was turned on its head.

"I'm bleeding," she said, tears streaming down her cheeks as she tried to keep her voice calm so she didn't scare her daughter. Her husband was staring at her. "It's happening again."

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Pregnancy and childbirth are presented in this shiny, happy light in movies and on TV — pregnant women glowing with anticipation; gender reveal parties full of joy and cheer; 3D ultrasounds showing perfect features and tiny socks to cover the tiniest of toes.

But pregnancy doesn't always have a happy ending.

While October gets a lot of attention as breast cancer awareness month, it also has another designation: Pregnancy and Infant Loss Awareness Month. It received that designation in 1988 from President Ronald Reagan, to help raise awareness and provide resources for parents who have lost children due to miscarriage, ectopic pregnancy, molar pregnancy, stillbirths, birth defects, SIDS, and other causes.

"When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, there isn't a word to describe them," Reagan's proclamation noted.

Nearly 30 years after that designation, however, there still remains a deep discomfort in discussing the subject, which can leave many parents feeling isolated as they try to cope with the tragic loss that happens far more frequently than people realize.

Statistics from the Mayo Clinic say 10 percent to 20 percent of known pregnancies end in miscarriage, which is defined as pregnancy loss up to the 20th week. "But the actual number is likely higher because many miscarriages occur so early in pregnancy that a woman doesn't realize she's pregnant," the site notes.

Stillbirths, defined as the death of a fetus from 20 weeks to full term, occur in about 1 percent of all pregnancies, and each year about 24,000 babies are stillborn in the United States, according to the Centers for Disease Control.

There are still other families faced with the loss of an infant; the CDC says for every 1,000 babies that are born, almost six die during their first year; 23,000 infants died before age 1 in 2014, the agency says.

And frequently when it occurs, whether it's a miscarriage at 6 weeks or the death of a full-term term infant, the families grieve alone, because no one around them knows what to say and they often aren't aware of those around them who have suffered the same pain.

Riki Milchman, marketing director for the New Jersey Chapter of the TEARS Foundation, says that is one reason she became involved in the foundation, which offers support for families who have lost babies to stillbirth or early infant death. In New Jersey, roughly 1,300 babies are stillborn or die before their first birthday each year, she said.

Her son, Nathaniel, was one of those 1,300. He was stillborn on Dec. 6, 2008, two days after her due date.

"He was born silent," she said. "He was full term, 7 pounds, 14 ounces. We had no expectation that anything was wrong."

"We were blessed, in that we had good support," to get through the initial haze and maze of laying to rest their son, which included having a friend who was a funeral home director. But Milchman said she came to learn that for so many families, the loss of an infant brings a wide range of challenges that can disrupt and impair a family's ability to grieve that baby's death.

"They don't have the money for a funeral," she said.

That's where TEARS comes in, providing grants to help families with those expenses but more importantly, providing support by way of other families who have been through that loss.

Very few people faced with a stillbirth or the loss of an infant have had to plan a funeral even for an older family member, Milchman said, and the process can be confusing. Add in the shock of an infant's death and it becomes overwhelming, she said.

The TEARS Foundation, which operates a Center for Pregnancy & Infant Loss in Wall Township, also provides a variety of support groups, for parents, for siblings, and more.

This month, TEARS is trying to get the word out about the services the nonprofit organization provides through its #BreakTheSilence campaign. The campaign aims to let families know they are not alone in what they are facing, but also aims to help educate various groups of professionals who come in contact with grieving families.

"People say the wrong things, like 'it was God's will,' or 'you will have other children,' " because they don't know what to say," Milchman said. And often those well-meaning words can simply exacerbate the pain. They encourage medical professionals to allow parents to hold the baby, and she said they tell funeral directors to ensure parents have received footprints and handprints of the baby.

Most of all, she said, professionals need to be compassionate, understanding and patient with the requests of grieving families.

"The loss of an infant is a very difficult loss," Milchman said. "It is very different from any other loss a person can experience."

Milchman said the foundation, which relies on donations, aided 350 families financially last year, and hundreds of others through their Peer Companion program and other support systems.

The #BreakTheSilence campaign isn't just aimed at professionals, however, she said.

John Ostapovich, who along with his wife, Linda, are co-leaders of the New Jersey chapter, said they have been trying to spread the word to mayors and town officials throughout Ocean and Monmouth counties to help bring the campaign to the forefront.

They want to remind people to not shy away from discussing the subject of the loss of a baby.

"Parents who have lost a baby want that child to be remembered," she said.

Because for those who have suffered that loss, you never forget. I certainly have not.

When I woke up that bright Easter morning, April 20, 2003, I had no sense that anything was wrong. I was 8 weeks pregnant, our second attempt at trying to have another child. I had suffered a miscarriage the prior September, also at 8 weeks. That one came with warning signs; spotting led to bed rest for three days. I still remember the stoic face of the ultrasound technician as she searched futilely for the heartbeat that had been so strong three days prior.

The doctor's words from that September day still echo in my head. "The fetus is no longer viable."

While that first loss was difficult, the Easter loss was crushing. It occurred on the due date of the baby that I'd lost in the first miscarriage, but more to the point, it now raised all kinds of questions about why I had suffered two in a row. I'd been careful to get more rest, to avoid anything that could be perceived as a contributing factor, including caffeine.

It was incredibly isolating. Family and friends just didn't know what to say; I needed to talk, but how do you talk to people who don't understand why you can't just "forget it and move on," as some said to me. The most infuriating response came from a therapist I went to — for one session. She blew me off as being a whiner. "Your life isn't that tough," she said.

I finally quit trying to talk and simply saved my crying for when no one was around. The ache worsened. So much so that when I realized I was pregnant yet again, late in the summer of 2003, I told no one, not even my husband. "If I make it past 8 weeks, I'll tell," I told myself. No need to get anyone else's hopes up when I couldn't even deal with my own feelings. At 8 weeks and 3 days, I felt the hormones in my body shut down, just as if someone flipped a light switch. The tenderness in my breasts disappeared, and I knew it was just a matter of time. Two days later, the cramping began and back to the hospital I went. I wanted the bed to swallow me whole. I just wanted to disappear, so that maybe, just maybe, the pain would go away.

It didn't, because there was one unanswerable question: Why. There were no answers, not even after a full reproductive workup with multiple blood tests and ultrasounds.

I ended up suffering five miscarriages in all between September 2002 and February 2006, all of them at 8 to 9 weeks of pregnancy. The last two happened despite supplemental progesterone and self-administered shots of heparin. That puts me in a "special" category — recurrent miscarriage, defined as three or more consecutive losses.

There's nothing special about it, lemme tell you.

I am lucky in one regard: Some women who suffer recurrent miscarriages are never able to carry a baby to term. I had a daughter who had arrived healthy and whole as the result of a physically uneventful pregnancy five years prior — a fact that made my subsequent miscarriages that much more mystifying.

I battled severe depression after the successive losses, and it took five years of therapy with a wonderful psychologist to get a handle on the grief — a grief compounded by the death of my mother when I was pregnant with my daughter — so that it no longer swallowed me whole on a daily basis.

For those who find themselves facing the unthinkable, please know there are people who understand. In addition to the TEARS Foundation, there are a number of support groups for those who have lost a baby — people who understand your pain. People who will listen when you need to talk.

Look up The Compassionate Friends, which has support groups around the country. There is the Share Pregnancy and Infant Loss support network. There is the First Candle organization, also dedicated to pregnancy and infant loss.

Milchman said the TEARS Foundation is holding a fundraising walk next May to help it continue to aid families who need help with funeral costs for infants. Investors Bank recently donated $2,500 to the New Jersey chapter, but Milchman said the need continues to grow. You can donate to the New Jersey chapter of TEARS here. They also are hosting a fundraiser Oct. 23 at the Barnes and Noble in Monmouth Mall, with the New Jersey TEARS chapter receiving a percentage of the day's sales. You can participate online or through a voucher on the group's website; scroll down that page to their upcoming events for information.

If you want to do something to help someone who's suffered this loss, the best thing you can do is listen. Don't offer advice. Tell her it's OK for her to be angry about it with you. Don't offer suggestions of what went wrong, because they prey on a woman's worst fears. Just listen, let her know you love her, and that you're sorry she's in so much pain.

My daughter is nearly 19 now, pursuing her dreams in college, and is the absolute delight of my days. But I still think about the angels I lost. The first would be 13 now, a freshman in high school. If the fifth pregnancy hadn't ended in miscarriage, that baby would be 10 now. Our lives would be very different in ways I can only imagine and guess at, because you never know, even when a baby is born, what direction that child will take your life. But those are just thoughts. They flit past like butterflies.

You move on, because life demands it. You come to terms with the losses. But you never, ever forget.

Everyone finds their own way to honor their losses; mine include porcelain birthstone booties, angel sculptures, and a print of the ultrasound showing my baby's heartbeat. The ceramic heart was a gift from the doctor who treated me after my third miscarriage. Karen Wall photo/email: karen.wall@patch.com