Finding help and hope after a baby dies

By Katie Riley

It's never easy to lose a baby. In recent years, however, more resources have become available for parents struggling with infant loss. Annapolis and Baltimore area hospitals have introduced perinatal support programs to counsel families in the event of a late-term loss or unexpected death of an infant and there are more outreach and support programs in Maryland.

"I think one of the biggest misconceptions about infant loss is that because the baby didn't have the time of an older child or adult, that it's easier to bear," says Heather Silver, the perinatal specialist and social worker with the Chesapeake Life Center in Glen Burnie. "It's not. As soon as you have that pregnancy positive, you are planning for the child. You are not losing a pregnancy, you are losing a life."

According to the March of Dimes, each year more than 24,000 babies in the U.S. will die during their first year of life, and nearly one in four pregnancies will result in a loss. Some babies pass away from complications at birth, others will die in the womb, and still others from SIDS or SUDI, (Sudden Unexpected Death of an Infant), which is similar to SIDS. Unlike the death of an older child or adult, the death of a baby has unique challenges for bereaved parents.

InfantLossMainWOn a recent morning, Diana Silva, of Arnold, enjoyed the quiet of a local coffee shop while her 8-week-old son, Rio, gurgled happily in his car seat next to her. Diana savors the moment, but her joy is bittersweet. Four years ago, she unexpectedly lost her older son, Tenoch, when he was just 7 weeks old.

Tenoch died from from SUDI when he stopped breathing while sleeping in his infant carrier. In the years since Tenoch's death, Diana and her husband, Richard, continue to grieve, but have been able to find a great deal of support and counseling available in the community.

Support groups for grieving parents

Heather Silver has developed outreach and support programs to help families who face the loss of a baby in utero, or for families like the Silvas, who have experienced infant loss.

"We provide one-on-one counseling, couples counseling and support groups for grieving families," Silver says of the Chesapeake Life Center, which is the bereavement care center of Hospice of the Chesapeake. "We are trying to help them find their new normal."

Silver herself is no stranger to loss. After suffering five miscarriages with her husband, some of them late-term, she realized there was a lack of resources for parents facing infant and pregnancy loss.

"At the time, there was nothing out there for miscarriage, nothing for parents facing a loss," she says. "It can be incredibly isolating."

The heartbreaking day

For Diana and Richard, surviving the loss of Tenoch, has been a daily struggle. Four years later, Diana is able to talk about the day that Tenoch died, but her sadness is profound.InfantLossTenochWDiana and Richard Silva with a scrapbook page of Tenoch.

"We wanted to start a family tradition," Diana recalls of the day they visited a strawberry farm when Tenoch was 7 weeks old. After nursing him, Diana placed Tenoch in his infant carrier and a short time later, she noticed he wasn't breathing. He was rushed to the local hospital where Diana and Richard were told he had died.

"When Tenoch passed away, we left the hospital with nothing," Diana says.
"There was no one there to help us, and we were not given any emotional support."

A few weeks later, Diana heard through a friend about a local grief counselor that specialized in perinatal and infant loss.

"If we hadn't found Heather and the Chesapeake Life Center, I'm not sure we'd be here," she says.

Diana and Richard began one-on-one counseling with Silver, as well as couples counseling, but it was the small-group counseling that made the biggest difference.

"Being able to talk with other couples, ones that had experienced a similar type of loss, was invaluable," she says. "They are like family to us, because we went through this together."

One of those couples was Lauren and Zack Wissman, of Glen Burnie, who lost their son Camden in October 2013 at 4 months old. Camden was a happy baby with seemingly no health problems until he stopped breathing while sleeping in his playpen at a caregiver's home.

After receiving support from a crisis counselor and chaplain at the hospital, the Wissmans tried to cope on their own, and to keep going for their daughter, Mia. A family friend recommended the Chesapeake Life Center a few weeks later.

"In the months afterward, it was very, very hard. It was like being underwater and you never know when it's going to end," Lauren says. "I had to keep going for my other child, but I wasn't the same person. There's no handbook on how you should be. It was hard to be a mom that first year. It's still hard."

Lauren and Zack began weekly counseling sessions with Silver, who soon suggested group counseling with other couples.

"Seeing people who were able to move on — it helped to see that there is hope," Lauren says.

Despite the support of the Chesapeake Life Center, Diana and Lauren find that it is an ever-evolving journey, one that presents new challenges every day.

"I didn't send Christmas cards for the first three years," Diana says. "It's hard to write down those names. It always feels like someone is missing."

Keeping memories alive

Diana and Lauren both went back to counseling when they became pregnant again after their losses.

InfantLossCamdenWCamden Wissman"A new pregnancy has its own set of fears and anxiety," says Silver. "It's important for them to enjoy this baby and learn to cope with the fears and stress that will naturally arise."

"Heather taught me that you can appreciate having your 'rainbow babies,'" Lauren says, referring to her pregnancy after Camden. "She saved me from myself in so many ways."

Today, Diana and Richard are the parents of two more boys. They strive to keep Tenoch's memory alive, and incorporate him into their family as their younger sons grow up.

"I feel him with me all the time," Diana says. "We don't have a plan. We just want them to know they have an older brother watching over them."

They honor Tenoch every March with the Tenoch-a-thon, a 5K-memorial walk held on the B&A Trail in Severna Park. The walk helps to raise funds for the Chesapeake Life Center.

The Wissman family is also navigating life without Camden by keeping his memory alive through family photos and daily talks and prayers with their two daughters. Last June, they held a brunch and balloon release in honor of Camden's first birthday.

"I am always happy to talk to others about what he meant to me, how beautiful he was, how much I miss him," Lauren says. "My biggest fear is that he will be erased — that one day I will be 50 and wake up and feel like it was all a dream."

Grief counselors like Silver recommend talking openly about infant loss.

"We must honor those memories, find meaning in them," she says. "Grief is a process of remembering, not forgetting."

Click next below for resoruces and tips for those who have lost a baby


Resources for those who have lost a baby

Chesapeake Life Center, Glen Burnie
Professional counseling and support groups for women and families who have experienced infant loss, SIDS, late-term pregnancy loss and miscarriage. The Center also offers a perinatal palliative care program for support and planning for families of babies with a fatal diagnosis.
Chesapeake Life Center also operates support groups in Prince George's County.
chesapeakelifecenter.org
410-987-2129

University of Maryland Center for Infant and Child Loss, Baltimore
Grief support and counseling for families who have experienced infant and child loss. The Center has support groups, educational workshops, special events and memorial services for families throughout Maryland.
infantandchildloss.org
410-706-5062

Gilchrist Hospice, Columbia
Grief support and counseling services for families who have suffered a loss. Gilchrist offers educational workshops, newsletters, retreats and special events for the bereaved. Heather Silver with Chesapeake Life Center is also in partnership with Gilchrist Hospice to offer perinatal and infant loss support services through their locations in Baltimore and Howard counties.
gilchristhospice.org
443-849-8200

Tips for those enduring infant loss

If you have suffered a loss:

  • Know that you are not alone. There are many families who suffer the pain of losing a baby.
  • Consider counseling and support groups. It can be very helpful to express your feelings with others as well as healing to share your journey with other families who have been in a similar situation and have a deep understanding of your relationship with your baby.
  • Honor your baby in whatever way is comfortable for your family.

If you know a family that has suffered a loss:

  • Acknowledge the loss and ask about their child. If they have chosen a name, call their baby by name.
  • Recognize that mementos from a pregnancy and birth are a part of that child's legacy. Help to honor and celebrate the child.

InfantLossHeatherWHeather Silver talks about infant lossA silver lining

Heather Silver is making a number of contributions to the world of grief support services for parents who have experienced the loss of an infant.

She has formed partnerships with local hospitals, healthcare providers and national bereavement services to help bring hope to grieving families. In addition to her work with parents who have lost an infant, Silver specializes in counseling for families faced with a lethal fetal anomaly — babies who will not live long after birth.

"The biggest thing we are trying to give families is control in an out of control situation — to establish a birth plan and work on legacy building," she says. "We work with siblings to help them understand what's happening and find a way for the family to cope."

In addition to her work with the Chesapeake Life Center and her private counseling practice, Silver is a nationwide speaker for Resolve Through Sharing, a bereavement services organization that educates healthcare providers. For more information, visit bereavementservices.org.

Silver is also producing a documentary called "Time We Share," which chronicles the journey of three families enduring pregnancies in which the babies will not survive long after birth. For more information about the documentary, visit
documentary.org/film/time-we-share.