Through Ellie’s Eyes: Creating a foundation of support for births without the happy ending

The birth of her stillborn daughter in 2025 was not unexpected, and it set Elizabeth Mohney on a mission to ensure that there was support for women like her.

Now 21 weeks pregnant with her third child, she and her husband, Nathaniel, created a  Foundation called “Through Ellie’s Eyes” to honor their daughter and provide support to mothers like her whose babies pass while still in the womb.

“It was founded a few weeks after Ellie was born. We knew after her diagnosis that we wanted to make a difference, and we realized through our journey that there was a lot of support for families who lose a baby after it’s born, and that’s a very unique type of grief. 

“But there’s another grief for those who received a diagnosis and continue their pregnancy and live that in-between of carrying a baby and preparing to say goodbye, which is a really unique journey,” says Mohney, who lives in Gobles with her husband and two-year-old son, Booker.

A genetic screening detected that Mohney’s baby was at a high risk for Trisomy 18, “a condition that causes physical growth delays during fetal development. Life expectancy for children diagnosed with Edwards syndrome is short due to several life-threatening complications of the condition. Children who survive past their first year may face severe intellectual challenges.

“Trisomy 18 and 13, which are similar to Down syndrome, are the two that are not survivable,” says Mohney, a part-time Compliance Specialist at Kalsee Credit Union.

Seventeen weeks into her pregnancy, an ultrasound was performed, which showed that Ellie did not have any physical markers for Trisomy 18. One week later, another ultrasound was performed, and the Mohneys found out that their baby was a girl. They gave her the name Eleanor “Ellie” Grace Mohney.

Their happiness was overshadowed at Week 19 when results of an echocardiogram indicated that their daughter had a serious heart issue called HLHS (Hypoplastic Left Heart Syndrome), a condition that about one in 3,846 (about 925) babies in the United States are born with each year, according to the Centers for Disease Control.

“During pregnancy, a fetus has two small openings between the left and right sides of the heart. These openings are called the patent ductus arteriosus and the foramen ovale. These openings in the heart usually close a few days after birth,” according to information on the CDC’s website. 

“In babies with HLHS, the left side of the heart cannot pump oxygen-rich blood to the body properly. Oxygen-rich blood bypasses the left side of the heart through the patent ductus arteriosus and the foramen ovale. This issue occurs during the first few days of life. The right side of the heart then pumps blood to both the lungs and the rest of the body. When these openings close, it is harder for oxygen-rich blood to get to the rest of the body.”

At 20 weeks, Mohney underwent an amniocentesis, a prenatal diagnostic test typically done between weeks 15 and 20 of pregnancy, where a physician takes a small sample of amniotic fluid from the womb using a thin needle to check for genetic conditions like Down syndrome or neural tube defects, according to Johns Hopkins Medicine.

That test confirmed that Ellie had Trisomy 18, which meant she would no longer be a candidate for multiple surgeries that are required soon after babies with this HLHS are born.

“It took about one week to get the results back that she had full Trisomy 18. She was no longer eligible for anything but Comfort Care at Bronson,” Mohney says. “We met with Hospice and the hospital’s Palliative Care Team and were told that she could pass anytime between now and when she was born. We knew she wasn’t going to make it and had Hospice set up just in case.”

For the duration of the pregnancy, the family spent a lot of time together, much of it praying. Mohney says, “We were not a religious family, and Ellie was our salvation. She brought us back to our faith.”

At 38 weeks, two weeks shy of the normal duration of a pregnancy, Mohney’s labor was induced after abnormally high levels of amniotic fluid were detected in her womb, causing Ellie to have difficulty swallowing.

On the morning of November 3, Mohney was admitted to Bronson. At 8:25 p.m., Ellie would be recorded as a stillborn birth. She weighed 3 pounds, nine ounces and was 17 inches long.

One hour before Ellie was born, Mohney says she felt her kick. There was no movement after that.

Ellie was dressed in a baptismal gown at the hospital after her family spent some time with her and was honored during a Memorial Service on November 22.

“We had a hard time finding a christening gown that she could be buried in,” Mohney says.

These gowns are among the items that “Through Ellie’s Eyes” provides to families who live the reality of losing a baby while it remains in the womb or at birth.

“We spent countless days on research ourselves. Through that journey and losing Ellie, we knew there needed to be more support through that in-between time so people don’t feel so alone,” Mohney says. “We provide Grace and Gift boxes that are unique to each family after we receive their story. There’s a lot of self-care items for moms and remembrance items for their babies. We have a lot of people making things and people volunteering a lot of their time to help us.”

Scrolling across the bottom of the “Through Ellie’s Eyes” website are the names of children like Ellie, who the Mohneys remember as “a daughter who lived wrapped in love and now rests wrapped in light.”