Sweet heart: Moses Lake baby keeps smiling through transplant

MOSES LAKE — The doctors knew Ava Jaymes Stemhagen would have a fight on her hands before she was even born.

“We knew at 20 weeks (of pregnancy) that something was wrong with her heart, and that’s when we started going to the specialist,” said Ava’s mother Stephanie Stemhagen. There’s a technical name for the problem, but in essence one side of Ava’s heart failed to develop properly.

“They knew that something was off with the heart, but they wouldn’t really know until after (she was born) the extent of everything,” Stephanie said. When Ava was born it was clear the problem was very bad indeed. She had her first open heart surgery when she was two days old, said Ava’s father Kyle.

“A parent’s worst nightmare, really,” said Ava’s grandmother Patty Stemhagen.

But Ava is one tough kid. She came through a second open heart surgery in April, and received a new heart in September.

Ava’s doctors were confident the first surgery would buy her some time. “But they did tell (her parents), after she had that first surgery, that she was a prime candidate for a transplant,” Patty Stemhagen said.

The doctors said Ava’s heart was damaged in such a way that sooner or later it would fail. But doctors expected it to last longer than it did. Ava’s heart transplant was Sept. 18, at about 10 months of age.

The Stemhagens are working with an organization that helps families raise money to offset some of the expenses associated with organ transplants. Stephanie Stemhagen said she learned about the Children’s Organ Transplant Association from medical professionals at Children’s Hospital in Seattle, where Ava received her new heart.

Prior to the transplant, Ava’s heart was so weak she couldn’t eat, so she had a feeding tube. She was supposed to get a boost from her second heart surgery, but it didn’t really work out that way.

“That (the second surgery) was supposed to be the fix for years,” Stephanie said. “But it didn’t last very long.”

“It didn’t last five days,” Kyle said.

“The pressures in her heart didn’t do what they wanted it to do,” Stephanie said. “So the blood wasn’t cycling in her heart like it should.”

The fact Ava’s heart wasn’t working properly caused other problems – she developed pneumonia and blood clots and had to fight a collapsed lung. “We were in Spokane (at Sacred Heart hospital) from April 5 to June 5, and we’ve been in Seattle (Children’s Hospital) from June 5 to now,” Kyle said.

The heart transplant was Ava’s only option, and she was sick enough that she went to the top of the list. Once a heart was available the doctors had to work quickly; the operation had to be completed within a few hours.

Even after the transplant it’s been a battle – Ava’s heart stopped, and the steps needed to revive her led to yet another surgery.

The COVID-19 outbreak was an additional obstacle. Only her mom and dad can be in her room. Even her big sister Kylie, 8, isn’t allowed to enter.

But Ava’s still fighting, and that has endeared her to people who know her. “That’s what kept her going, is that spunk she has,” Stephanie said. “Ava is really loved over there (at the hospital).”

“When she’s feeling good, she’s always smiling,” Patty said.

“She likes Mickey Mouse, and trolls,” Kyle said. And she loves watching television, Patty added.

In fact, one of the nurses got between Ava and her Mickey Mouse cartoon and earned a ferocious frown. “She can’t talk, but she can get her point through,” Stephanie said.

She has progressed far enough that she has been moved from intensive care. She will have to take medicine her entire life, Stephanie said, and the open heart surgeries have imposed some physical limitations.

But Stephanie has seen improvement. “Definitely. She’s smiling a lot more, just being her little crazy self. A lot of her personality is coming back,” Stephanie said.

“The Children’s Organ Transplant Association is a 501(c)(3) charity dedicated to organizing and guiding communities in raising funds for COTA in honor of patients like Ava Jaymes,” Patty Stemhagen wrote. “All funds raised for assistance with transplant expenses are tax deductible and all funds raised go to the families.”

The organization “helps transplant families avoid financial devastation,” Patty wrote. “Once a transplant is complete the family still faces significant transplant-related expenses. Medications, transportation to and from the hospital, and lodging while the child is in the hospital.” Transplant expenses can exceed $1 million, she wrote.

People who want to donate to the fund can contact Patty Stemhagen at 509-750-9032 or pstemhagen@gmail.com. Donations may be made directly to the COTA fund at www.COTAforavajaymesfight.com. Donations also can be mailed to the Children’s Organ Transplant Association, 2501 COTA Drive, Bloomington, Indiana, 47403. Donation checks should include “Ava Jaymes fight” on the memo line.

Cheryl Schweizer can be reached via email at cschweizer@columbiabasinherald.com.