Benefit planned for infant diagnosed with rare lung disease

"We had no idea anything was wrong."

That's how Skylar and Cabre Reynolds describe the first few minutes of their daughter Teigyn's life.

The 5-pound 8-ounce bundle of joy, the couple's first child, arrived Sept. 12, 2023, at Boone County Health Center in Albion.

It would take approximately six weeks before the Reynolds would learn Teigyn was battling neuroendocrine cell hyperplasia of infancy, a rare disorder of the lungs.

This Sunday, residents from Skylar's hometown will host a benefit for the family at the Ewing United Methodist-Presbyterian Church, 119 North Spruce Street, in Ewing, from 11 a.m. to 3 p.m.

Immediately after birth, Teigyn experienced breathing issues. Doctors believed the newborn took in fluid during the birthing process, noting she needed to expel the excess fluid in her lungs.

"It just wasn't happening. Her stats were dropping pretty quickly," Skylar said.

Within a half hour of birth, doctors removed Teigyn from the room.

"They took her to the nursery, took her to x-ray. We only got to see her for a few minutes," Skylar said.

Physicians from BCHS contacted Omaha's Children's Hospital. A LifeFlight helicopter was dispatched to pick up the newborn. Within a few hours, Teigyn was headed to Omaha, while Skylar and Cabre hoped for answers.

"It was hard," Skylar said. "We spent about a day and a half in the labor process. All we wanted to do was just cuddle Teigyn and relax."

Doctors were unable to release Cabre from BCHS, but Skylar and his father-in-law, Denny Johnson, headed to Omaha immediately.

After the fluid was removed, Teigyn still experienced breathing issues. According to Skylar, physicians thought Teigyn may have respiratory distress syndrome, which should have resolved in a couple weeks.

"It never did," Skylar said.

By the end of October, doctors intubated Teigyn for additional testing. According to Skylar, one doctor considered sending the family home, with Teigyn on oxygen.

"But it was a lot of oxygen for a baby her size," he said.

A second physician said he wasn't willing to release her until they determined why Teigyn needed that much oxygen.

"That's when they dug deeper," Skylar said. The pulmonologist came in with the NEHI diagnosis.

According to the NEHI Research Foundation, NEHI was first identified and classified in 2005, a subgroup of children's interstitial lung disease. Typically, the disease presents within the first two years of life. The cause isn't clear, although clinical studies and research suggest the distal airways restrict, which leads to air trapped in the lungs.

Symptoms include respiratory distress, hypoxemia, failure to thrive and a crackling sound, heard through a stethoscope, as the child inhales.

On Nov. 2, the Reynolds family of three returned to their Albion home. Teigyn, who was seven weeks old at the time, required oxygen support 24 hours a day. By Christmas, the amount was reduced.

Skylar said, while they are slowly working Teigyn off oxygen support, she still requires it during the night. That need may continue for a couple years.

Medical personnel believe as Teigyn continues to age and grow stronger, the need for oxygen will continue to be reduced.

"Or come down to not needing it at all," Skylar said.

She'll also be susceptible to an increased probability of illness. Skylar said she may require oxygen to get through cold and flu season when she's older.

"That could last throughout her childhood and teenage years. "We just don't know."

Participation in sports will be harder for her also, Skylar noted.

The Reynolds spent their first Thanksgiving and Christmas together at home, separate from extended family, although they relied on Facetime to connect.

In the last month or so, Teigyn's grandparents have been able to make occasional visits. Visitors wear masks and the Reynolds find they clean and disinfect everything in the house more often.

With NEHI, an increased risk for aspiration exists. A swallow study confirmed Teigyn was aspirating, so a feeding tube was inserted. It was removed in January.

Skylar said since then, she's been taking the bottle really well, although they thicken the liquid.

While the Reynolds continue to see improvements with Teigyn, the cost of medical care has taken a toll.

During the extended hospital stay in Omaha, Skylar was able to continue work remotely for Madison County Bank. Cabre left her position at Boone Beginnings, an early childhood center. Per doctor's orders, Teigyn cannot be in daycare.

"We lost a whole income we weren't accounting for," Skylar said.

Since the new year began, the Reynolds have traveled to Omaha a couple times a month for doctor visits. Teigyn sees a handful of therapists monthly in Columbus. Her medical team is hopeful the length between visits widens as she continues to improve.

At this Sunday's benefit, Teigyn will not be able to attend, per orders of her pulmonologist. Her parents have a plan, though.

"We're going to try to Facetime at church," Skylar said.

Sunday's benefit includes a hot beef sandwich meal for a freewill donation. A silent auction will also take place.