Bereavement doula helps families navigate grief

Having lost her own baby shortly after birth, Jessica Fulford knows how traumatic this grief can be and aims to provide support to those facing loss through miscarriage, stillbirth, or neonatal loss.

Eight years have passed since Fulford lost her son Jaron Isaiah, and while she says the grief doesn’t go away, it does get lighter.

“Jaron Isaiah means ‘I cry out, God delivers,’ and we knew one way or another that was going to be his story,” said Fulford.

Navigating life after death is difficult and nuanced, especially when it involves the death of an infant. Fulford works as one of the only certified bereavement doulas in Montana and commits her time and resources to providing information, choices, and a calming presence to families experiencing loss.

At her first ultrasound with Jaron, Fulford was told that her yolk sac was enlarged and to expect a miscarriage. But it never came. At a second ultrasound, spots were found on her baby’s lungs, and she was transferred to maternal fetal medicine.

“At my 20-week anatomy scan doctors found a hole in his diaphragm muscle which would keep his heart and lungs from developing properly,” said Fulford. “Babies who have a diaphragmatic hernia have a 50% chance of survival, but we were told he probably wouldn’t even make it to viability.”

While the chances of Jaron’s survival were slim, Fulford and her husband, Ben, still had hope that a long NICU stay would be the worst case scenario. Eventually, she transferred to Children’s Hospital in Orange County to receive care from specialists until Jaron was born at 38 weeks gestation with Cornelia De Lange Syndrome, a rare genetic disorder that had gone undetected.

“I got to see him for maybe two seconds before they intubated him, and he was stable once they did that,” said Fulford. “Because we were still trying to get Ben a flight down here, and my mom and sister were with Jaron, I was alone when the neonatologist came in and told me that Jaron had a hole in his heart that was previously undetected, his stomach and his intestines were up in his chest, one of his lungs was smaller, and that he was deaf.”

A heartbreaking realization, the neonatologist then told Fulford that her son was “incompatible with life.” Along with Jaron’s physical conditions, he also had no higher level brain function.

“As hard as that was to hear, it made the decision a lot easier,” said Fulford. “We didn’t want to put him through all of these surgeries if he was just going to be in a vegetative state.”

Two days after Jaron’s birth, Fulford and her husband made the difficult decision to take him off of life support. Jaron lived five hours after the tubes were taken out and spent the last hours being showered with love from Jessica and Ben’s families. Grandparents, aunts, uncles, cousins, siblings, and friends came alongside them until it was time to say goodbye.

“That was the worst day of my life,” she said.

Despite the pain of losing her son, the experience set Fulford on a new path and allows her to use her testimony to be a companion to grieving families.

“Grief is like an ocean. Sometimes it’s huge and waves are crashing all around you,” she said. “But I will stand in those waves with you. I’m never going to make it OK and I would never tell anyone that I can make it better, but I can make it more bearable.”

Fulford carries some of the load for families by providing emotional support and resources such as life after loss groups, aiding families in deciding on a funeral home, setting up meal trains, packing up the nursery, and helping moms come up with a birth plan.

“I help families come up with terminal diagnosis birth plans where there’s even more attention on the birth process because you know this will be the last interaction physically with your child,” said Fulford. “I offer to do the research so the family doesn’t have to wade through pages of medical documents and I can go to the doctor with them and take notes. I present them with all of the choices. Do they want to breastfeed, what levels of intervention do they want, do they want the monitors on, what important pictures do they want.”

In honor of Jaron’s first birthday, Fulford raised money for the Kalispell hospital to get a CuddleCot, a mobile cooling cot that preserves the appearance and condition of the deceased, allowing families to spend more time together.

“As soon as a baby dies, they start to decompose. So the CuddleCot, which looks like a normal bassinet, keeps the color longer and keeps those effects of death from coming. Our hospital also has weighted bears now.”

The weighted bears are distributed to families after losing their baby and are part of a program called Comfort Cub, which is only able to continue thanks to Fulford and her parents’ ongoing financial support.

“There’s an actual physiological thing that happens when people experience traumatic grief where the left ventricle of the heart restricts so the blood doesn’t flow through it as easily. It feels like you’re having a heart attack and moms who have lost their baby say their arms ache to hold their baby again,” Fulford explained. “They’ve found that if you hold something that is approximately the same weight of a newborn, it triggers the brain to release the pressure on that left ventricle. One of the most traumatic things is being wheeled out of the hospital with nothing.”

Though Fulford recognizes the value of her work, she is completely self-funded so that no matter a family’s financial situation, they can utilize her services. Fulford offers training for churches and hospitals and partners with several postpartum resource groups in the valley to spread the word about Jaron’s Hope, the name of her organization.

“There is nothing more isolating than losing a baby, but I’ll do anything I can to make the worst day of your life a little more bearable,” said Fulford. “I want to remind them that one day you won’t have to remind yourself to take a breath. One day you’ll be able to talk about your child and just smile.”

Reporter Summer Zalesky may be reached at szalesky@dailyinterlake.com.