Eastern Iowa girls with special hearts take flight

NORTH LIBERTY - Squealing and prancing like a typical 3-year-old, Kailey Strehlow bounded into the living room of her North Liberty home shortly before bed and proudly lifted her shirt.

Scars decorated her chest. One ran down the center.

'Can you talk about your special heart?” asked her mom, Holly Strehlow.

Kailey, like just 1 in about 5,000 U.S. babies, was born with hypoplastic left heart syndrome. That means, essentially, she has only half a functioning heart. The same is true for her best friend Arrayah Fortner, who was born five weeks later, also at the University of Iowa, with the same condition. But you never would know it.

The girls give big hugs. They share big smiles. They demand to have their picture taken - and then to look at it immediately.

'They do everything that every other little girl wants to do,” Strehlow said. 'But they're doing it in a different setting.”

That setting, largely, has been the hospital.

Recently, when both girls again found themselves admitted at the same time, Kailey was discharged earlier.

'Before she went home, Kailey came and laid in bed with Arrayah,” said her mom, Liz Fortner, of Marion. 'They're very concerned about each other.”

Since the girls were born at the UI Hospitals and Clinics in the summer of 2015, their families have been close, sharing time together and their emotions.

'There are still nights when I'll message Holly, middle of the night, ‘Hey, are you awake? I'm having a really bad day. The surgery is getting really close, and I'm starting to become really nervous,'” Fortner said.

That surgery she mentions - the one that's getting close - is happening this week.

Both girls boarded a private plane this weekend at The Eastern Iowa Airport in Cedar Rapids to fly to North Carolina, where they'll undergo open heart surgery Tuesday and Wednesday at the Duke Children's Pediatric & Congenital Heart Center. Without treatment, their condition results in a 95 percent mortality rate.

Although they've received much of their care at the UI, their surgeon - Joseph Turek, who served as chief of pediatric cardiac surgery at the UI for years - relocated to Duke in August 2017. The families were willing to make the long drive there to stick with him.

'He knows her heart. He knows our history,” Strehlow said. 'We've built a relationship with him, and we trust him. And continuity of care was something that was really important to us.”

Turek told The Gazette continuity is important to him, too.

'Yes, I know their hearts, but I also know their families and they know me,” he said in an email. 'And when your child is undergoing something as scary as a third heart surgery, you want the comfort of that familiarity.”

Hypoplastic left heart syndrome requires three operations - one in the first few weeks of life, another around six months and the third around age 3. The goal of the final operation is to 'reroute the plumbing to accommodate only half a heart,” he said.

'I performed their surgeries before, and as you can imagine, I have become quite close to these families,” Turek said.

Considering Duke is 1,000 miles away from Iowa City, the parents were either going to make the drive or fundraise for plane tickets - until Children's Flight of Hope intervened.

The North Carolina nonprofit, which provides air transport for children needing specialized medical care, secured a corporately-donated flight - valued at upward of $15,000 - for Kailey, Arrayah and their parents.

'We were prepared to drive across the country if that's what needed to happen,” Strehlow said. 'So the fact that this was presented to us as an option we think is amazing. And it just worked out that the girls were ready at the same time, so we could go at the same time.”

The flight marks the girls' first time on an airplane - excluding the air transport Arrayah needed at birth. And the girls are excited to do it together - mostly.

'Are you gonna fly on a plane?” Strehlow asked her wide-eyed daughter, who gave a quick and enthusiastic, 'Yeah!”

'Who are you gonna sit by?” she asked Kailey, who quickly said, 'Rayah.”

'No,” Arrayah said, reaching for her mom.

'You're gonna sit by me, too,” Fortner assured her.

The operations are expected to take about five hours each, according to Turek, and the girls will be in the hospital for seven to 10 days before returning to Iowa - again, courtesy of Children's Flight of Hope.

Although the girls are aware they're taking the plane to see a doctor, their moms are much more keenly so.

'I think we're ready, but we're not,” Strehlow said. 'We're ready to put it behind us. And for the girls to feel better. Their oxygenation should be better. They should have more energy. We're ready for that.”

But Fortner said she has her worries.

'I'm not so ready for them to have any sort of pain,” she said.

Turek said the operation - while not any semblance of a cure - will increase the oxygen in their blood, hopefully decreasing their fatigue.

'Sometimes the change is really dramatic as they come in with blue lips and leave with pink ones,” he said. 'The parents can usually notice right away after the operation.”

Although this is the last open-heart surgery scheduled for the girls, the families are prepared for a lifetime of ups and downs - a roller coaster they're glad to be riding together, having found each other while pregnant via a social media heart group.

When Strehlow received the scary diagnosis nearly 20 weeks into her pregnancy, she wondered if she had done something to cause it. The doctors assured her she had not.

'I wondered if she was in any pain,” Strehlow said about her daughter. 'And they assured me she was not. I just wondered what life would be like for her.”

But the doctors offered no assurances about that. Instead, they offered support groups and pamphlets.

'But I don't think it was until I found a group with other moms who had children who were older, and I could see how their children were living their lives, that really helped me,” Strehlow said. 'It was nice to see there was life beyond that, and they could find a new normal.”

It also was nice to meet other moms in the same situation, at the same time, to walk alongside - and fly alongside.

'It was just nice to know you're not alone,” Strehlow said.

l Comments: (319) 339-3158; vanessa.miller@thegazette.com