Sharing Sunshine through Katherine's light

Sunlight lands different on the Nebraska Sandhills. As the giant orb breaks the horizon, the promise of a new day casts hues of yellow and orange against a cerulean sky. By midday, the sun's rays build in brilliance, a sign of growth and prosperity, land covered with promises of a brighter tomorrow.

At dusk, pastel clouds paint the western sky with a warm glow. Even as lighter shades give way to darkness, glimmers of hope continue to peek through, offering encouragement.

Look close enough and you'll recognize light and love, shining forever bright, as the memory of Katherine Nan Koinzan takes flight.

The pregnancy

Greg and Courtney (Nichols) Koinzan's roots run deep in Nebraska's landscape. Greg grew up in Neligh and Courtney, in Bartlett, children of farmers and ranchers.

The couple, who lives in Neligh, are parents to three children: Etta, age 5; Otto, age 3; and Katherine, who will be forever young.

"All along I felt like something's just not right," she said.

Courtney said she felt ill during the pregnancy, experiencing hyperemesis, or nausea which won't stop. Severe vomiting may also be a symptom. Typically, it leads to dehydration. According to the National Organization for Rare Disorders, the condition appears in .5 to 2% of pregnancies.

During routine checkups at AMH Family Practice Clinic in Neligh, Dr. Kelli Osborn asked if Koinzan had felt the baby move. She hadn't.

"I had this thought in the back of my head," she said.

On Dec. 17, an anatomy scan, performed between 18 to 22 weeks of pregnancy, took place. This test checks development of a baby's organs and body parts. It also can detect certain congenital disorders.

Koinzan said she and the ultrasound technician were chatting during the procedure, when the tech "got quiet," noted some of the baby's measurements were off and said Koinzan talk should speak to her health care provider.

"Dr. Osborn was on maternity leave, so I saw Dr. (Josh) Thoendel," Koinzan said.

He informed her that the baby's limbs weren't measuring right and suggested she see a maternal/fetal specialist in Omaha.

On Dec. 23, following an ultrasound at Women's Methodist Hospital, the Koinzans were told, "You have a really sick baby."

"What does that mean? What does that look like?" Courtney thought.

Dr. Todd Lovgren told the Koinzans that, after speaking with a genetic counselor, they believed Katherine had skeletal dysplasia. More testing was ordered.

Skeletal dysplasia is a category of rare genetic disorders that affect bone formation and joints. According to the Mayo Clinic, more than 200 known skeletal dysplasias exist.

“I want to prepare you that you might have a miscarriage,” the doctor said.

An amniocentesis came back inconclusive about what type of skeletal dysplasia was affecting Katherine, but what medical personnel did know was that it was associated with only one gene.

"Only Katherine and another baby have had this," Koinzan said.

She scoured the internet for information about what the disorder looked like.

That's when the doctor told the couple, "I'm 99% sure your baby won't survive. All the markers of a fatal form of skeletal dysplasia are present."

More appointments.

More decisions to be made.

The Koinzans agreed they wanted their daughter to be as comfortable as possible, without pain.

They created a comfort plan.

"If our worst fears are realized, we didn't want intervention, but wanted Katherine as comfortable as possible.

The delivery

On March 18, the Koinzans traveled to Omaha for an ultrasound. Courtney's blood pressure was high. Lovgren was on vacation and the on-call physician admitted her for monitoring.

"I broke down. I wasn't prepared, I wasn't ready," Koinzan said. "I'm not ready for my baby to die."

Courtney's parents, Letti and Doug Nichols, made their way to Omaha. Greg's mom, Sandy Koinzan, was also there.

Courtney said it was always the couple's intention to bring Etta and Otto to the hospital.

"It would be the only time they would be together (with Katherine)," she said.

Lovgren was in town and available for Katherine's delivery.

"He came in and said, 'We won't go until you're ready.' We sat and talked. Maybe it was God's timing," Courtney said.

At 9:40 p.m., Katherine made her entrance, born at 34 and one-half weeks.

"She was born with a head full of strawberry blonde hair," Courtney said. "The other two were bald."

Medical personnel told the family to spend as much time as they could with the baby.

Greg and his mom both held the baby.

Two nurses monitored Katherine's heartbeat, letting the family know it was slowing down. Greg handed the newborn to Courtney.

"I kept telling her it's ok, it's ok. I told her about heaven and all the people waiting for her. I told her Jesus was there and not to be afraid," Court said.

An hour later, Katherine's heart beat for the last time.

The hospital has a cooling cot, allowing the Koinzans to spend more time with their daughter.

The cooling cot is a devise laid under the surface of a crib, helping cool and preserve a baby's body.

"We walked out the door with a folder of grief groups in Omaha instead of a baby," Courtney said.

The grief and stigma

One in four women will experience pregnancy or infant loss in their lifetime. A 2020 study reported that 29% of women experience post-traumatic stress disorder following a miscarriage, while 24% feel anxiety. Eleven percent of study participants experienced moderate to severe depression.

Following Katherine's death, Courtney felt isolated.

"There were no options, no support. We're so limited here."

A grief support group meets in Norfolk and the nearest pregnancy loss support group meets in Omaha.

Koinzan said a lot of stigma exists around baby loss.

"A lot of women suffer in silence," she said.

After Katherine's obituary, older women approached Koinzan, sharing their pregnancy loss stories.

"I just wish there wasn't such a stigma. It happens and you shouldn't have to be alone."

grief affects each person differently.

Koinzan said it doesn't follow stages.

"You don't get to mark one off and then go the next and then when you're done, you're done. It doesn't work that way," she said. "It's like a roller coaster and you'll never get off. One moment will be like this and the next you're down here. You just have to ride it out.

Although Koinzan meets with a grief therapist via Zoom - she notes it is important to work through grief and talk - she found strong support among other grieving mothers, primarily on Instagram.

She found comfort and courage from Abel Speaks, a Dallas-based family whose own journey mirrors the Koinzans.

"The loss community is an amazing community," she said.

The light

It’s Katherine’s light that nudged Courtney to channel her grief.

"I needed Katherine's life to matter and I knew she was going to change the world," she said.

What Courtney didn't know, at the time, was what change would look like.

"I prayed a lot."

After meeting other loss moms, Katherine's focus became clear.

"I think it was God who told me Katherine's Light was my mission," she said.

The Koinzans are in the process of forming Katherine's Light Foundation, a non-profit organization supporting loss families.

The idea to spread sunshine, even in the darkest of days, turned into the creation of a sunshine box.

Each box contains a journal and pen, a laser-etched ornament with a mom and angel baby, crochet hearts, a book, key chain, memorial candle and other items.

"Everything in the box - 98% of items are made or donated by other loss moms."

The Koinzans have purchased items that have not been donated.

Initially, the idea was to take boxes to hospitals for distribution to grieving parents.

"After talking to local hospitals, I knew we needed to do something bigger," she said.

She bounced ideas off a friend from Alabama.

"I want somebody to say, 'Here's a bright light in my day, where it isn't so dark.' I want her light to shine, I want Katherine to guide the way," Koinzan said.

A submission form is available, online, to request a box.

Koinzan's goal was to send five boxes to loss families by the end of 2022. The first box was sent in August.

As of Oct. 11, 43 boxes have been sent across the United States. A request was made for a box to be sent internationally.

"It's amazing we can reach that far," she said.

Each item is wrapped in yellow tissue paper, then placed in a larger box. Packing boxes is a family affair, with help coming from the Koinzan household. Courtney's mom also assists.

"We say each baby's name and pray over them when we're packing the boxes. "

It's part of her plan for the foundation.

"If I can make one less mom feel alone, one more mom know she has someone standing next to her, then my work is done. I don't want anybody to ever feel like I did."

The future

Some days, when packages arrive, filled with items for the sunshine boxes, Etta will ask, "Is this for the angel babies?"

"It's their legacy, too," Courtney said.

Her mission is for Etta and Otto to know they have a sister, who will always be part of the family, will always be their sister even though she isn't here.

"Grief, for kids, is hard. There's no research. No map. We're flying by the seat of our pants, but the more we talk about it, the easier it is to talk about."

On Sundays, the family visits Katherine's grave in the Bartlett cemetery. They take fresh flowers. Sometimes, Etta and Otto fight over who gets to give them to their sister.

"That's our normal now. We're all together," Courtney said. Etta. Otto. And, Katherine Nan, named after Courtney's grandmother and Greg's grandmother.

Rays of sunshine land different here in the sandhills, as butterflies flit among the flowers and life takes a new form, a purpose no parent should hide from, but embrace and share the light.

"It's beautiful here," Courtney said. "She's home. She's at peace."

For more information, visit the foundation's website at linktr.ee/katherineslightfoundation, on Facebook at facebook.com/katherineslightfoundation or on Instagram at katherines_light_foundation.