Story by: Eva Ellenburg
The fluorescent hospital lights feel like an assault on her eyes. The voices around her sound like Charlie Brown’s teacher – incoherent wah wah’s. Her insides are on fire, her body slick with sweat.
She tries to strip off her hospital gown — it feels like a fur coat.
She vomits, over and over. An invisible knife keeps piercing her head. Everything hurts, even her eyelashes.
Am I dying?
Sarah Bender Hope can’t understand what the doctors are telling her – the world is spinning like a cyclone. The few words she catches make her panic.
Preeclampsia. Life or death. Emergency C-section. Isaiah.
Hope has just started her 25th week of pregnancy — the cusp of viability.
Delivery is the only cure to the life-threatening form of preeclampsia she has developed — a severe pregnancy complication called HELLP syndrome that has made her blood pressure rise to a staggering 225/125 and is attacking her kidneys and liver. Nurses pump her with medications in a desperate bid to prevent a stroke or seizure.
In the thick fog of her mind, Hope thinks she must choose between herself and the baby.
“I choose the baby,” she says, over and over.
Her husband, Nik, starts to cry.
“No, I choose you,” he says, over and over.
No, the doctor tells them, that’s not the situation. Isaiah’s third lung branch hasn’t developed. All we can do is provide him comfort care after birth. But Hope is dying — and we have to do an emergency C-section to save her. Right now.
At 9 a.m. that day, Hope went to a routine OB-GYN appointment.
At 4:30 p.m., Isaiah Ellington Hope is born on March 25, 2013, at Mission Hospital in Asheville. Bob Marley’s “One Love” plays in the background. He is 11 ounces, 9 inches, and looks just like Nik.
By 5:30 p.m., Isaiah is gone.
______________________________________________________________________________
Some 11,000 babies in the United States die within a day after birth. About 24,000 stillbirths occur annually, while as many as one in four known pregnancies end in miscarriage.
In their grief, parents may consult therapists, clergy or support groups. A small but growing number are turning to bereavement doulas, who support and guide families through pregnancy losses and early infant losses.
Unlike midwives, birthing doulas aren’t healthcare providers, but they receive training and certification to learn about breathing techniques, positional changes and other comfort measures during labor.
They offer physical and emotional support during pregnancy, birth and the post-partum period, and they educate women about what’s happening to their bodies through these stages.
Bereavement doulas, a subset of the profession, guide families through the losses that can accompany the early stages of life — miscarriages, stillbirths and early infant deaths. They serve as birthing coaches if needed, but their role of emotional support is even more crucial for these families.
Susanna Elliot, the founder of New Creation Birth Services in Wake Forest, became certified as a doula in 2010.
She said she still gets emotional after births.
“I sort of got addicted to the feeling of being at a birth and seeing a baby born,” she said. “It never gets old.”
Elliot is no stranger to birth — she has five living children.
But her experience with loss led her to receive bereavement training shortly after she became a doula.
After her first son was born, Elliot became pregnant with twin girls in 1999. Her doctor told her she miscarried both babies at 13 weeks — but months later, a presumed stomach bug turned out to be another miscarriage.
She had been pregnant with one twin for four more months after the other twin died and never knew it.
Elliot was devastated. She soon became pregnant again but miscarried five weeks later.
After three losses in a row, she wasn’t sure if she would ever hold a baby again.
But she did — a boy and two girls. When she became pregnant in 2008 with another daughter, Lia Joy, she felt like her family would be complete.
At 20 weeks, doctors discovered her baby had a fatal chromosomal disease.
Elliot went home and bought a device to listen to Lia Joy’s heartbeat every day. She crocheted blankets for the birth and burial. Her children sang to her belly.
Weeks later, on a day she could no longer hear the heartbeat, Elliot went to the hospital and was induced.
Her daughter’s skin was blue, bruised and transparent, something her obstetrician hadn’t warned her about. She and her husband made the last-minute decision to not introduce their other children to Lia.
“If I had been prepared, I could have prepared myself and them,” she said. “I’ve done that with other families, so that they kind of know how to prepare the siblings, because now I wish (my children) got to meet their sister.”
That’s what Elliot does now — she prepares her clients for the unexpected details and decisions that come with having a stillbirth or an early infant loss: What will the baby look like at this gestation? Will your other children meet your baby? Do you want to listen to the heartbeat during delivery? If the heartbeat stops during labor, will that make it harder to keep laboring? Do you want to have a funeral?
______________________________________________________________________________
In the early weeks after Isaiah’s death, Hope could barely move. It hurt to breathe. She didn’t want to eat.
“I’d rather just sit here and starve,” she remembers thinking.
She developed a slew of health problems from her near fatal medical experience. She had panic attacks and flashbacks. Sometimes it felt like she couldn’t escape that operation room.
Suicidal thoughts became familiar intruders to Hope. She knew the only way to survive was to face her pain — she found a therapist, went to a grief retreat and received diagnoses for post-traumatic stress disorder and dissociative disorder.
And somehow, she survived that first year, and the year after that.
Then, she became pregnant again. In August 2015, she developed HELLP syndrome, a severe type of preeclampsia, for the second time — an incredibly rare occurrence. She was 24 weeks pregnant.
Her husband Nik experienced the worst kind of déjà vu — the morning phone call, the same receptionist and nurses, the same hospital floor.
“I felt just as lost and bewildered as I did the first time,” he said. “The only thing that changed was the room.”
Hope had another emergency C-section, giving birth to another son, Solomon. He immediately went into the NICU. The outlook was better than with Isaiah, but doctors still didn’t know if he would make it.
After multiple brain surgeries and a four-month NICU stay, they brought him home.
Today, at 4 years old, Solomon has cerebral palsy and multiple other health issues. But he also chatters nonstop, laughs a lot and has his dad’s smile.
“Sometimes when I’m stressed, I just pull out my phone to look at a picture of him, and then I’m good,” Hope said.
While Solomon was in the NICU, Hope attended baby loss advisory training sessions, where she learned how to help families encountering a loss.
Hope remembered how bereaved parent support groups helped her feel less alone after Isaiah. She had always been interested in childbirth and once wanted to be a midwife. But now, she had this experience with loss — and she wanted to share it.
After receiving her Baby Loss Parent Advocate Certification, Hope was approached by the owner of Homegrown Babies, a business in Asheville offering doula and childbirth education services, about joining her team. So, she received additional training and become a certified bereavement doula.
______________________________________________________________________________
Elliot, who is studying at Southeastern Baptist Theological Seminary to become a licensed professional counselor, typically serves clients who are anticipating losses — they know they will have a stillbirth or an infant who will die early.
But she helps families who experience other losses too, such as miscarriages.
She offers doula services from a Christian perspective for those who want it, but she works with clients of all religious beliefs.
Elliot helps parents create a birth plan and start processing their grief, even before the loss occurs. She also teaches them about the physiological aspects of pregnancy, birth and the loss of a baby. Depending on when the clients come to her, these prenatal appointments typically begin eight to 16 weeks before birth.
She’s also present in the delivery room to coach the mother through labor. Her main goal is to help parents advocate for themselves and make informed decisions about anything from epidurals to how much time they’ll spend with their baby after death.
Elliot guides parents in planning the small ceremonies that might not cross their mind in the delivery room — baths, photographs, footprints, reading stories and introducing the baby to other family members.
“I find that the more families do with their baby — what I call saying hello before they say goodbye — the easier it is for them to say goodbye,” she said. “All of those things help to honor that baby’s life.”
She tells her clients to reserve a space where they can grieve as intensely as needed. That could be a journal, or support group, or even a burial site.
For Elliot, it was Lia Joy’s funeral and gravesite — something she didn’t have for the other babies she lost. The grave became a refuge to cry or pray or talk to her daughter.
“Somebody saw that my daughter was a human being who had been taken from me too early, and so that made all the difference,” she said. “It didn’t just help me grieve her, but it helped me to grieve the three I lost before.”
Elliot counsels families post-partum for as long as they choose, helping them remember and mourn.
The work can be devastating — but she feels it’s an honor too.
She has personal ways to process the grief for her clients’ babies. She has her own therapist. She attends funerals when she’s invited.
Sometimes, she makes her own tributes. Her first bereaved family’s son was born at dawn, and he kept puckering his lips. After his death, she got up early to watch the sunrise and eat Hershey’s Kisses.
______________________________________________________________________________
Hope began seeing clients in 2016 — and she realized she was good at it.
“I think because I’m so open with my story, it makes other people more comfortable to share too,” she said.
She visits families at the hospital and lets them share stories about their babies — she remembers how it felt after Isaiah’s death, when she just wanted to talk about him all the time.
Hope cries with parents, helps them bathe their baby’s body, makes sure photos are taken and refers them to therapists, funeral homes and her grief support group. She also volunteers as a support person for parents in the NICU, using her experience with Solomon to empathize.
Hope checks up on families for up to a year and a half after their loss — sending them cards on anniversaries and near the holidays, and just showing up when they want to talk.
She leads a monthly grief support group, where couples come to confidentially share their loss stories and process their trauma.
Angela Sanders, a regular attendee, said the group therapy helped her and her husband start communicating again after she gave birth to a stillborn baby — a son, Milo.
But most importantly, she found a community of people who understood her pain.
“I didn’t feel alone anymore,” Sanders said.
Hope says that sometimes, she has to take a step back.
During the weeks before Isaiah’s death anniversary, she doesn’t typically work with bereaved families. Sometimes, emotions will overwhelm her, and she has to step out of the hospital room. Checking up on herself ensures that she doesn’t project her grief onto her clients.
Hope said the work has made her more compassionate— and it’s led her to embrace both life and death. She now carries Isaiah’s ashes in an urn whenever she travels.
“I’m more comfortable with death than I ever thought I would be,” she said.
