Searing grief of infant death, miscarriage too often goes unspoken

  • Bereavement specialist Owaissa Vanderberg shows the “&” tool she uses while counseling parents who have lost a baby or child. TNS/Sarah Espedido

  • Bereavement specialist Owaissa Vanderberg shows a wand she uses as a therapeutic tool to counsel parents who have lost a baby or child. TNS/Sarah Espedido

Orlando Sentinel
Published: 11/19/2019 1:00:16 AM

Jennifer Glisson vividly remembers her firstborn’s final hours — the doctors and nurses giving him chest compressions, the flat line on the monitor, and the voice of her husband calling family to tell them that their 3-month-old son had passed. She remembers holding Ronan’s limp body.

“It’s almost like you’re there, but you’re having an out-of-body experience watching it from the outside,” she said recently of her son’s 2017 death. You don’t really register anything until you start to process it later.”

In the following months, grief-stricken and numb, Glisson started to drink a bit more. She spent a lot of money buying custom-printed shirts in Ronan’s memory. She started a blog to share what she was going through. But nothing made her pain go away.

“You look at yourself in the mirror, and you’re like, ‘I hate myself. My son is gone. Why am I here?’ It’s hard to process all that, and I didn’t have the tools to process it in a healthy way,” said Glisson, who lives in Orlando, Florida.

A few months after Ronan died, Glisson left her job in the middle of the workday, got into her car and drove straight to his grave.

“I literally just drove, but it was like I wasn’t even there, as if somebody else was driving me,” said Glisson. “And I remember just sitting there bawling and I told my mom that I didn’t know what was wrong with me. And she said, ‘Nothing is wrong with you. You just need to talk to somebody.’

One in four pregnancies ends in loss, including miscarriage, stillbirth and infant death. But many families don’t discuss it.

“It’s almost like a taboo subject, like people are afraid to talk about it,” said Jennifer Combs, a nurse practitioner and certified perinatal bereavement counselor. “We don’t talk about things. And then these parents don’t get the assistance and help that they really need.”

Parents who lose their babies can feel guilt, shame, stigma and grief in the short and long-term. The loss of a baby can also affect relationships and jobs, according to a recent study by Canadian researchers.

“And like any other serious loss or trauma that is unsupported or unacknowledged, it certainly can lead to serious depression and anxiety. And it can lead (parents) to make different decisions about getting pregnant the next time,” said Dr. Renee Boss, associate professor at the division of neonatology at Johns Hopkins School of Medicine in Baltimore, who has published extensively on pediatric palliative care.

Some parents stop talking about their loss after repeated awkward and sometimes insensitive comments from friends or strangers.

“Everybody in the society says that it didn’t happen,” said Glisson. “And it’s not that they say it like that, but they say nothing at all or make comments like ‘Oh, God will bless you with twins next time.’... For me, it almost got to the point to where I had to apologize for bringing him up, and I don’t think that’s fair.”

Jessi Leach, whose son Elliot died four hours after being born in May this year, can’t stand it when people use the term “at least.”

“‘At least you can have another baby. At least you know you can get pregnant. At least he didn’t suffer,’” said Leach. “There’s no ‘at least’ in baby loss. No other baby is going to replace him. He was wanted and it was him that we wanted. We do want other children, but we wanted him.”

Families who have had miscarriages may be even less willing to share their loss and carry the grief with them for years without disclosing it to anyone.

“A lot of times people will say, ‘Well, they were early on and they didn’t really bond with the baby,’” said Combs. “And that’s 100 percent not true.”

A 2015 survey found that more than half of 1,000 participants thought miscarriages are rare, even though about one in four to five pregnancies end in a miscarriage. The survey also showed most parents attributed the loss to something they did, even though that’s almost never the case because an underlying medical condition leads to loss of the pregnancy.

“And they really felt the pain (of loss), even though a lot of people who haven’t gone through a miscarriage kind of assume it’s not such a big deal,” said Dr. Zev Williams, one of the study authors and director of Columbia University Fertility Center. “So I think these factors conspire to make women and couples going through pregnancy loss feel incredibly isolated and alone.”

Dads suffer, too, but they usually hide their pain, exacerbating their grief and leading to strain in relationships.

“I usually take the dads aside and tell them that it’s OK to cry, because sometimes men just need that permission,” said Combs. “Men like to be a caretaker to their partner. They want to fix everything and they can’t fix this, so a lot of them, I notice, get undone because they can’t fix it.”

Tiffany and Jason Johnson lost their daughter Megan last year, when she was 21 days old. She was born with a congenital brain anomaly.

Jason threw himself into gardening as a way of dealing with his grief.

“(Tiffany) will embrace anything and everything that, I feel, is remotely related (to Megan) and I just can’t do that,” Jason said. “For a while, I’d come home and find her in the bedroom and she’d be curled up with one of Megan’s blankets and just in tears. I can’t do that. I don’t want to do that. I feel like I have to not do that in order to get myself to the next day. I just can’t dwell on it. So I have to just push on. I have to push forward. That’s all I know how to do.”

It’s hard to know what percentage of grieving parents receive counseling or are at least offered the services, but there’s growing awareness among hospitals and practitioners that the emotional needs of the parents are as important as their medical needs.

“Twenty years ago, I think that this was a topic that was still not spoken about much. Maybe there were some local resources, but nothing like what is in place now,” said Boss of Johns Hopkins. “(Today) there’s absolutely more support all across the United States for families in this situation. That being said, of course, there still remains variability in how many services are locally available, how robust they are, how long they last, etc.”

No magic wand

On top of a shelf in her small, serene hospital office, Owaissa Vanderberg has a box that holds a wand.

For kids, it’s a toy, but in her office it is one of the handful of tools that she uses to help families come to terms with grief.

For some families she carefully unboxes the wand, holds it in her hands and tells them that it’s broken. Unlike Cinderella’s Fairy Godmother, she can’t wave it and make their pain go away.

“I tell them that I can’t hope for your child to come back to life, but I can hold hope that you’ll grow. I can hold hope that you will find some purpose and meaning in this experience and I can find hope that you will find health,” said Vanderberg, a pediatric bereavement specialist.

And little by little she helps them to rebuild the foundation that they thought had crumbled.

“I tell them, ‘Let’s work on the repair piece. Because we can’t fix this. But how can we repair it and make it meaningful?’” said Vanderberg.

She meets families during pregnancy or almost immediately after loss. With their permission, she calls to check on them and sends emails and handouts about grief and loss.

It was one of those postcards that Glisson, now mom to an 8-month-old daughter named Cara, eventually picked up to make an appointment with Vanderberg.

Glisson had had a couple of false starts with other therapists, but that didn’t discourage her. She knew she had to do something.

“I got to the point where I knew if I didn’t do something to better myself it was going to affect (my daughter) in the long run and it was going to affect my marriage and my relationships with everyone else,” Glisson said.

She’s been going to see Vanderberg for six months now, and little by little she’s learning how to express her emotions instead of bottling them up.

“In one of the sessions, I told her that something’s wrong with me, because I broke a dish,” recalled Glisson. “And she’s like, ‘So? Look at what you went through. You haven’t had an outlet for two years. Break more dishes!’ And that made me feel like, ‘OK, nothing’s wrong with me.’ ”




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