Emily Mortenson’s and Deb Hansen’s hearts still are healing from the loss of an infant and a miscarriage, respectively — grief that is propelling them to help others cope with that unique variation of mourning.
They will strive to ease others’ pain through a pregnancy and infant loss support group that will meet from 5:30 to 6:30 p.m. on the second Wednesday of the month beginning Sept. 14 at the Franciscan Spirituality Center at 920 Market St. in La Crosse.
“We want to be there to be a help to people,” said Mortenson, whose son, Theodore, died when he was just 24 days old on March 17, 2011. “It is important to see somebody else has gone through it. We’re surviving, but we are scarred.”
“The whole idea is listening with compassion,” said Hansen, who had a miscarriage toward the end of her first trimester 25 years ago. “We want to enable people to talk without feeling judged.”
Her own pain remains even after a quarter-century, said Hansen, who is spiritual director at the FSC.
“That’s probably been, after all these years, the hardest thing I still do,” said the 58-year-old mother of five, in addition to the lost baby.
Back then, a time barely emerging from the era when private matters rarely were discussed, few people acknowledged the miscarriage or consoled Hansen and her husband, Glenn, she said.
“My parents, to this day, have never recognized this happened,” said Hansen, who was living in Ohio. “They said, ‘But we prayed,’ and I said, ‘But the baby died.’ That’s still hard for me that they don’t recognize the death of their grandchild.
“Sometimes, older women — about the age I am now — would come up and say they had gone through the same thing,” she said.
The experiences can evoke feelings of second-guessing, wondering whether they could have done something differently.
“It’s easy to blame yourself and ask what did I do wrong?” Hansen said. “I had two kids who were in school, and I was going back to work when I got pregnant. I was a little resentful at first.
“Harboring that resentment, did I cause it?” said Hansen, who said she became aware as she and Glenn worked through their grief that she had not.
“Another thing, our two kids really shut down. They didn’t want to talk about it,” Hansen said.
The children, who had been excited about the pregnancy, knew they would have had a sister named Bethany or a brother, Jeremy.
Deb and Glenn had picked the names early on because that had been their family tradition, she said, adding, “We knew it was a little person.”
The children, who “had a sense there was a loss, and it was traumatic,” rebounded two months later when Hansen became pregnant with twins, she said.
The kids still haven’t talked about it much, she said.
“It’s part of our life as a family, but they’re not remembering June 1 like I do,” she said of a date burned in her memory that stirs her sadness anew each year.
Mortenson, an Onalaska native, and her husband, Sean, are both graduates of Aquinas High School in La Crosse. They were living in Colorado Springs, Colo., where Sean was stationed in the Air Force, and experiencing their first pregnancy when complications arose.
Ultrasound finds hydrocephalus
The first ultrasound indicated hydrocephalus, with fluid in the right and left membranes of the baby’s brain. Additional problems surfaced during ensuing tests.
The Mortensons learned during consultations with doctors that outcomes ranged from certain death to potential for life, with surgeries reducing possible disabilities.
At 22 weeks’ gestation, a doctor suggested considering terminating the pregnancy and told the Mortensons she would leave the room while the couple discussed it.
Mortenson recalled that she and Sean were stunned at the doctor’s suggestion of an abortion.
“Then Sean said, ‘Wait a minute, you don’t have to leave the room,’” and announced that they would not terminate.
“That was such a strange meeting for us,” she said. “We still had a lot of hope. We learned there are adults with hydrocephalus who live productive lives.”
Springing from that hope was the Mortensons’ decision to name the baby Theodore, which they chose because it means “a gift from God,” she said.
“We tried in some capacity to cope with such a traumatic range of outcomes,” she said. “Growing this life in you, you feel so full of life.”
After being delivered via cesarean section on March 17, 2011, Theodore “did great in the beginning,” Mortenson said. “He had the will to suck and breathe.”
Born with 10 percent of brain
Additional problems surfaced, and an MRI showed that, because of the fluid, “he was born with 10 percent of his brain, which tells your body to do everything — to breathe, to move. That isn’t something surgery can fix, and you can’t grow a brain,” she said.
Presented with the option of surgeries, which doctors said would be in vain, or allowing Theodore to die, the Mortensons heeded the professionals’ advice to withdraw nutrition and hydration, although providing pain relief.
“I’m a hospital social worker, and I see families make the decision all the time with their moms,” said Mortenson, who works part-time at Mayo Clinic Health System-Franciscan Healthcare in La Crosse.
“But for a first-time mom, it was totally out of character of the motherly instinct — a mother is supposed to protect. It was the hardest part, and I had the feeling it was not fair,” she said.
While the Mortensons lived with Theodore at the hospital until he died at 24 days, they experienced a mixture of reactions and support, Emily said.
“Like any loss, people came out of the woodwork. I was shocked by some who did, and by others I expected more from who didn’t. Relationship-wise, it really changed me. The challenging part is I have a harder time relating to people I’m close to,” she said.
“Some people I’m close to, they want me to go back to that old Emily, but I can’t, and I explain that. On the positive side, I love people who surprised me. I have been able to return that, and friendships blossomed.”
Similarly, Hansen said, “You do realize there is nothing you can say or do. Nothing comes out right, so the best thing is to say I’m here for you.”
Emily and Sean, a paramedic, take a family day on March 17 to commemorate Theodore’s birthday. They have two other children — Ruby, a 3-year-old they adopted, and Indimae, a 2-year-old biological child. Emily is pregnant, expecting delivery in February.
“I tell people I have four,” Mortenson said, counting Theodore and the bun in the oven, who she guesses is a boy — or maybe a girl.
Tolls on marriages
Miscarriages and infant deaths take uncommon tolls on marriages, statistics indicate.
A study in the journal Pediatrics in April 2010 found that 22 percent of couples who experience a miscarriage are likely to break up.
Figures for marriages after the death of a child are elusive, with most in the field dismissing the oft-cited 40 percent to 70 percent divorce rates as mythical. Most give figures in the 16 percent to 25 percent range more credence, and often say other factors may be involved.
Asked about the strain on their spouses, Hansen and Mortenson indicated that it took on similar forms.
“Glenn was much more worried,” almost overprotective, Deb said, especially when she became pregnant two months later. He insisted that she not strain herself, fearing another miscarriage.
It helped when another couple they knew who had endured a miscarriage also became pregnant, and they took comfort in their shared experiences, Deb said.
“I will never forget that time,” Mortenson said. “In the hospital, a social worker said 70 percent of marriages fail after a loss. I thought that wasn’t very helpful.
“My thought was that Sean is the only one who understands — Theodore is his son and my son.
“I don’t know whether it is this way with other couples, but Sean felt during the first year the need to take care of me. So he didn’t grieve, but that came out later.
“Today, our marriage is great, but it always had been. I understand, and Sean understands, the most. If we lose that, it would be such a dishonor to Theodore,” she said.
Honoring the losses is one aim of the support group, the only one of its kind in La Crosse. It is open to both women and men, who can attend as couples or individuals — whichever meets the needs. The group will take a drop-in format, in which participants can talk or just listen until they become comfortable enough to talk.
“You can ask questions, and cry as much as you want,” Mortenson said. “It is such a unique loss. We want to create a holding place.”