“She was such a small person but … had a really big impact,” Aimee Wingen says of her first child, Waylynn
Credit: Courtesy Wingen Family; Francesca Penko Photography
NEED TO KNOW
- Aimee Wingen lost her first daughter, Waylynn, to rare Zellweger syndrome in 2020 and has navigated grief and healing as a mom
- Now she and her husband have welcomed a second daughter, Elsie, and keep Waylynn’s memory alive in their bakery business in California
- “We wanted her to have a space in this world, even though she still wasn’t here,” Aimee tells PEOPLE
Little Elsie Wingen just came into the world in March, but she’s already a charmer.
“People say, ‘Oh, is that your first?’ And in that moment, my husband and I decide — do we want to tell them the truth or skip the grief about all [our] trauma?” mom Aimee Wingen tells PEOPLE. “But we also don’t want to ignore the fact that we had a whole other child.”
Mother’s Day each year brings a tangle of emotions for the family.
Though Aimee and husband Bryan Wingen’s first daughter, Waylynn Betty, died as a baby, her name and memory live on: in their town of Livermore, Calif. — where the Wingens opened a bakery after Waylynn’s death, in the onslaught of the COVID-19 pandemic — and beyond.
“She was such a small person but … had a really big impact,” Aimee says.
The couple share their story not out of despair but as another form of connection.
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Credit: Francesca Penko Photography
“We know Waylynn is looking over her strong, smart and spirited younger sister,” Aimee wrote in a recent local newsletter. “And to the women who may be struggling this Mother's Day, may this be a reminder that hope exists.”
Waylynn was born in December 2019 with a rare, terminal genetic condition called Zellweger syndrome that affects nerve and metabolic function and leads to organ problems — in the brain, the kidneys, the liver — according to the Cleveland Clinic. Symptoms include hearing loss, physical abnormalities, poor muscle tone, seizures.
The condition is inherited. Both parents must be carriers.
There is no cure.
Neither Aimee nor Bryan knew the potential risk prior to Waylynn’s birth in 2019.
“We were told she wasn’t going to live longer than a year,” Aimee, 39, says. “So we were celebrating the birth of our child but also planning for grief and loss. We didn’t know how to handle it.”
Compounding an already overwhelming situation was the spread of COVID in early 2020.
Aimee, a chef, “just started baking at home because everything felt so out of control,” she says, “especially when the pandemic hit, baking became the one controllable thing I had in my life.”
At first, she and Bryan sold bread out of their home. They built a loyal following among COVID-restricted neighbors who would pick up products from their porch.
It was a deeply strange time.
The focus on baking let them make money while staying home. As new parents, there was joy. As the parents of a terminally ill child, there were the ever-present complications and stress of treatment, of hospitals and, eventually, hospice care. Happiness mingled with a kind of anticipatory grief.
Waylynn died on Aug. 9, 2020. She was 8 months old.
“The community just really wrapped their arms around us during that time,” Aimee says.
In turn, she’s been open about her family’s journey.
She says her recent reflections in the local newsletter were because she had met so many other moms who had experienced stillbirths or miscarriages or infant loss.
“I was writing it to the moms of living children but also to the moms of passed away children or loss,” she says. “I don’t really like the term ‘Bereaved Mother’s Day,’ because I feel like we’re all moms, regardless if our children are alive or not.”
Part of their story is, of course, their second daughter. Aimee says that initially, she and Bryan felt they needed to “feel their loss” following Waylynn’s death.
Aimee recalls telling her therapist early on, “I really want to be a mom again.” She was told: “Well, I think you can accept there’s a world where you won’t be a mom again.”
Later, they lost a second pregnancy, at 16 weeks, to the same disorder that Waylynn inherited.
They had been pursuing in vitro fertilization last year and were preparing for an embryo transfer when Aimee became pregnant naturally with Elsie, who tested healthy and is a carrier but not affected by Zellweger syndrome.
The experience of leaving the hospital with a healthy newborn after a standard two-day stay — so different from the 18 days in intensive care with Waylynn — was an emotional milestone for Aimee.
“It was just surreal,” she says. “The biggest moment for me was when we got to leave the hospital like normal parents do … I cried on the way home.”
To navigate her grief and healing, Aimee has relied on therapy, online support groups for families affected by Zellweger syndrome and connections with other parents to process trauma and reduce the isolation often caused by loss.
“For a while, I felt very hopeless. Then I started putting one foot in front of the other,” she says.
She’s learned that funerals mark the beginning and not the end of grief. And she’s learned that being able to talk openly about babies who have died — in a way, she notes, that previous generations couldn’t — helps parents feel seen and less alone.
Credit: Brooke Shattuck Photography
“You still experience their life inside of you,” Aimee says. “When people tell me they lost someone, I say, "Can you tell me their name? Tell me about them.’ Letting go of that stigma that we can't talk about dead people is really helpful.”
The Wingens have woven Waylynn into their public life and business. What started as a COVID project turned, in 2021, into a brick-and-mortar bakery and restaurant named for their family.
Inside, there’s “Waylynn’s Room,” a welcoming space for children and parents; each year, they also host “Way Day” to celebrate her birthday.
“We wanted her to have a space in this world, even though she still wasn't here,” Aimee says.
Every Mother’s Day after Waylynn’s death, Aimee’s husband “has celebrated me, which is so sweet,” she says. This year, she says, “we'll be extra special with Elsie here.”
They plan to go to a wine tasting in “the beautiful Livermore rolling hills” with Aimee’s mother and other relatives.
She can’t wait to tell Elsie about her older sister, She remembers, after losing Waylynn, something surprising her mom told her: “Well, Grandma lost a baby at 2 months.”
“I never knew, because no one ever talked about it,” Aimee says. “There’s no photos. The family just pretended like it didn’t happen. A lot of women suffered in silence, because that’s how things were at the time.”
And that’s why she speaks out: “I think it’s important to talk about it and know you aren’t alone.”
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