The joys and pains of parenthood after infant loss

Most people see Amanda Demsky of Tryon as a busy mother with her hands full. She has a 5-year-old son, Noah, and infant triplets named Claire, Sadie and Ellie. But she also carries something others cannot see: the grief of two pregnancy losses.

Demsky and her husband are the parents of rainbow babies — children born to a family after an infant loss like a stillbirth, miscarriage or termination. There are a lot of rainbow babies out there, even if not every family uses the term. Miscarriage, which is the ending of a pregnancy before 20 weeks, occurs in 10%-20% of known pregnancies, according to Planned Parenthood. Stillbirth, which is the ending of a pregnancy after 20 weeks, occurs in one out of every 160 pregnancies.

Some parents who suffer a pregnancy loss describe feeling as if a bubble of innocence has burst. “When we lose an infant, the world as we assume it would be is severed,” explains Katherine Hyde-Hensley, a psychologist and rainbow child mother who is certified as a perinatal loss care provider. Welcoming a rainbow baby can bring complex emotions: These parents don’t want to get hopeful again because they know that even when a heartbeat sounds strong and even when Mom feels a kick, a pregnancy can still end in heartbreaking loss.

‘It should be magical’

When parents learn they are pregnant again after infant loss, they may want to celebrate, but they also worry about making a connection with a child who might not live. “They don’t allow themselves to think into the future,” explains Hyde-Hensley. “They take one day at a time.” This self-protection mechanism, while understandable, can sap the feeling of joy from the pregnancy and make it feel difficult for parents to bond, she says.

Jenna Crawford of Arden lost her daughter Abigail in 2021 during her 38th or 39th week of gestation. As soon as her next pregnancy was confirmed, she and her husband, Garry, began attending a weekly virtual support group provided by the Star Legacy Foundation for pregnancy after loss. All the parents in the group were stricken with the same anxiety about their next pregnancy outcome.

The Crawfords progressed through almost all three trimesters in a state of incredulity. “When we got to 36 weeks, we realized, ‘Oh, this could actually be a thing, we could actually end up having a baby,’” Garry recalls. They intentionally hadn’t readied their home for a newborn; the car seat, stroller and clothes they had purchased years ago for Abigail were kept in storage at Jenna’s parents’ house.

Demsky, the mother of triplets, also experienced anxiety during her successive pregnancies.

She called her pregnancy with Noah straightforward: “what you hope for with your first pregnancy — you want it to be magical and it should be magical.” When Noah was 2 years old, Demsky became pregnant again. But during a routine 15-week checkup at her obstetrician’s office, she learned that her baby, whom she and her husband had named Ethan, no longer had a heartbeat. It’s unknown why his heartbeat stopped. Demsky says it was more important to lay Ethan to rest than to expend effort on testing.

In 2022, Demsky experienced another pregnancy that ended in miscarriage. This pregnancy was different from the beginning, based on her experience of losing Ethan. “From the moment I took a pregnancy test, I was excited and scared because I was afraid we’d repeat our experience,” she recalls. At eight weeks, Demsky and her husband learned her fetus had no heartbeat.

Facing painful medical decisions, she chose to wait for her body to miscarry, ultimately with the help of misoprostol. But she suffered heavy blood loss, resulting in hospitalization and further procedures. She says she was not only mourning the pregnancy loss but also petrified that she might die and leave her son without a mother. She hadn’t told Noah about the pregnancy, she says, because after her first miscarriage, “it took him over a year to stop asking where the baby in my tummy went.” She also hadn’t told family or friends because telling them about the first miscarriage had been so awful. But now the experience was “harder because I felt like I had to deal with it alone.”

In late 2022, Demsky became pregnant with triplets. She was “terrified” about carrying triplets, she says. Multiples are already high risk, as are pregnancies in women over age 35.

Demsky was anxious right up until each infant was delivered by cesarean section at 35 weeks at Mission Hospital. Even in the 20 minutes between the time when doctors listened to the girls’ heartbeats and the time when she was wheeled into an operating room, she was worried about her babies’ survival.

Relief only came once she heard them cry.

‘A new outcome’

The Crawfords both say they experienced post-traumatic stress disorder after Abigail’s stillbirth. They created a private code to communicate about Jenna’s next pregnancy, where she would let Garry know whenever she felt a kick in utero. “We came to an arrangement where if she could text, she would text me ‘squiggle,’” Garry says. “That’s all I needed, just ‘squiggle.’ And I knew she was moving.”

The couple worked with Ali Monkemeyer, a perinatal nurse navigator at Mission Hospital who specializes in helping expectant families navigate the health care process during high-risk pregnancies, which includes prior pregnancy loss. She follows their care throughout pregnancy.

For some, like the Crawfords, just entering the hospital can be emotionally triggering. They remember a specific room or hallway from the time of the pregnancy loss, or they might feel panicked when looking at an ultrasound because they remember seeing one that had no movement. (Conversely, “some people say that they blank, and they don’t remember anything” about being in the hospital during the loss, Monkemeyer says.)

To address their anxiety, the Crawfords took multiple private tours of the hospital to expose themselves to the medical space when they were not under pressure, Monkemeyer says. They also had rainbow baby signs posted in the delivery room and hospital room so that everyone interacting with them during their birth knew of the family’s situation. The Crawfords welcomed their new daughter, Raine, on Nov. 1.

The simplistic assumption of welcoming children after pregnancy loss is that the joy of expanding a family makes everything better. But in reality, parents of rainbow children are parenting through their grief. Raine’s big sister, Abigail, is “never too far away from our minds and our hearts,” Jenna says. But the pregnancy loss creates a void, one that doesn’t go away, and as parents, “you just kind of have to figure out what to do with it,” she continues. “And Raine does not fill Abigail’s void, of course. She’s her own [person].”

Their pregnancy-after-loss support group helped them separate the experiences of the two pregnancies. “This is a new baby, this is a chance for a new outcome,” says Jenna of Raine, who snuggles against her mother’s chest wearing a monster onesie. “This is not a subsequent pregnancy with Abigail — it’s Raine’s story.”

Raising rainbows

Hyde-Hensley, the psychologist, says during a pregnancy after loss, mothers can “hold a lot of anxiety in their nervous system that directly impacts their rainbow baby.” And while raising a child, an anxious caregiver can inadvertently create separation anxiety that is really hard for both parents and kids. “The child senses that and is afraid to leave the parent because of the emotional enmeshment that comes from love and fear,” she explains.

Hyde-Hensley is the parent of a rainbow baby who is now in high school. Over time she learned to trust others caring for her daughter, but that was difficult. And “it was really hard to raise my rainbow and try to not have her live in the shadow of my sadness,” she says.

Some parents who experienced pregnancy loss will still think about the age their late child might be now, or what their life might have looked like. “You’re always going to wonder who they would have been,” says Demsky. “There’s not a day that goes by that I don’t think about them.”

She continues, “But I don’t usually allow myself to go in too deep because there’s so much I have to keep up with — with my 5-year-old and my girls.”