Jannelle and Chris Satterwhite keep a quilt with their daughter’s photo on their couch where she once sat each day. The family leaves it empty for her.
Jannelle and Chris Satterwhite keep a quilt with their daughter’s photo on their couch where she once sat each day. The family leaves it empty for her.

Editor's note: This is the second of a two-part series that chronicles what led to Hailey Satterwhite’s death in July. Read the first part here.

September 28, 2018

One hot, Iowa summer not long ago, when Hailey Satterwhite was 8 years old, she rode her bicycle on the Sauk Rail Trail with her dad, Chris.

They approached a steep hill close to Rolling Hills Park in Carroll, and Chris fell behind and lost sight of his daughter.

As Hailey raced ahead, Chris strained his eyes to find her.

His ears found her first.

“Woohoo!”

Hailey’s holler streamed back to him as she reached the bottom of the hill and smiled up at her dad, victorious.

She was so happy. So healthy.

A few years later, Hailey, the daughter of Jannelle and Chris Satterwhite of Carroll, died July 5 from a rare, progressive disorder that plagued her from the time she was young and eventually destroyed her lungs.

She would have been 11 this month.

——

Not long after that carefree bike ride, Hailey could no longer race her father on the trail to Maple River for sweet, ice-cold lemonades, or sit on the back of his motorcycle as he rode through Carroll.

During what would be her last year, Hailey was limited, and she knew it.

She needed an oxygen tank to help her breathe, and some days, she was too exhausted to move from her spot on the far left side of the couch in her family’s home in Carroll.

“She couldn’t walk to the bathroom,” Chris said. “We had our own little hospital going on over here. She just wasn’t doing well.”

One night, while she was sitting on the couch with her younger brother, Connor, and her dad, Hailey’s nose started to bleed.

Chris didn’t think much of it. Hailey had been through chemo and a bone marrow transplant when she was 4.

A little nosebleed was nothing, he thought.

Until it wasn’t so little. It poured and poured, and as Chris picked her up and carried her to the bathroom, removing her oxygen tube to try to deal with the blood, Hailey started to cough.

“She can’t get her oxygen if she is bleeding out of her nose,” Chris said. “I was freaking out.”

Scares like that were common as Hailey, over the years, acquired what Jannelle called a “revolving door of specialists” in Omaha who conducted tests to figure out why she was having sinus issues or coughing so much.

When Hailey was finally diagnosed with dyskeratosis congenita this past December, her doctors in Omaha said she needed extra support that they could not give her.

She needed new lungs.

And she needed to go to Texas Children’s Hospital in Houston to get them.

The Satterwhites set up 22 appointments with doctors for Hailey in Texas that would have started July 9.

They’d fly out the day before and undergo tests to see if she was a good candidate for a double-lung transplant.

This appointment was key to her recovery.

Hailey’s lungs were quickly deteriorating. She couldn’t run anymore, and some days, she could barely walk. Houston was the only solution left.

“Everything was diminishing and declining,” Chris said. “Shortness of breath, she couldn’t run — she couldn’t be a kid.”

The Satterwhites were depending on this trip to save their daughter.

——

As the family readied for the trip to Houston, Hailey’s pulmonologist, a doctor who specializes in diseases involving the respiratory tract, decided to do a bronchoscopy, a procedure that opens an airway between a patient’s lungs, to gather more information for the Texas specialists.

But after the March 21 procedure, Hailey’s health plummeted, Chris said.

“She was walking around (before), being about as normal for Hailey as Hailey could be,” he said. “She was pretty much fine up to that.”

But when she came home, something wasn’t right. Her lips were purple, and her oxygen was low.

Hailey and her mom rode from Carroll to Omaha, as they had so many times before, but for the first time, they made the trip in an ambulance.

She checked back into the Omaha hospital the day after she’d left, and a week later, she was still in the intensive care unit, hooked up to a ventilator. The doctors sedated her after she tried to breathe over the ventilator.

“It was like her whole body was a big convulsion,” Chris said. “She was trying to work over the machine. It was 10 days that she was sedated for. Every now and then, she would look around and just go back under.”

But she fought back and, by mid-April, was back home.

And for a short while, everything was OK.

Hailey was going back to school for a few hours a day at Adams Elementary School, where she was in fourth grade.

Her parents ended up getting her a wheelchair. Chris, when he pushed her to class, popped an occasional wheelie and made race-car noises to brighten her spirits, even as Hailey admonished him for getting her in trouble.

At home, Connor set up stacks of plastic cups for Hailey to shoot down with a Nerf gun from her position on the couch. When she wasn’t strong enough, Connor stood beside his big sister and helped her pull the trigger.

They continued to prepare for the trip to Texas that would change everything.

The hotel rooms were booked, the flights were taken care of and Hailey’s oxygen supply was all set up.

Now, they just had to wait.

——

By late June, Hailey had stomach pains and high blood pressure. She was tired all the time and asked to be left alone to sleep.

“We were waiting on her hand and foot,” Jannelle said. “We just wanted her comfortable and happy.”

They went back to Omaha to treat Hailey’s high blood pressure. Doctors said she needed a blood transfusion and a few days of observation.

Chris’s phone had an app that kept him up-to-date on Hailey’s results when he couldn’t be at her appointments.

That day, he got an alert.

“Every test, every notification, goes to my phone,” he said. “One of them popped up on my phone saying ‘heart failure.’”

Hailey was retaining fluid that put pressure on her lungs and heart. Doctors were unsure of the best way to remove it.

Still, the Satterwhites believed, everything would be OK. They would get the fluid dealt with and then get ready to head to Houston.

Doctors inserted a long catheter to make IVs and blood draws easier and decided Hailey needed to fly to Houston in a medical helicopter rather than on a commercial airplane.

But then, on July 3, about 10 of Hailey’s specialists, along with her parents, held a conference call with the Houston doctor they had planned to meet in just a few days.

He didn’t think Hailey was strong enough for that treatment. The 22 appointments. The possible double-lung transplant.

Jannelle and Chris didn’t understand.

“Nicely, he told us ‘no,’ but he didn’t tell us ‘no,’” Jannelle said. “He just said, not right now.”

And then they realized: Not only would Hailey no longer be going to Houston, but she might never leave the hospital in Omaha again.

“They literally just told us that our daughter was going to die, pretty much,” Chris said.

Still, they tried to keep things as normal as possible for Hailey.

The next evening, Hailey decided she wanted to have a girls’ night with her mom. They had planned to watch a movie and just enjoy their time together.

Instead, Hailey complained throughout the night of pain in her sides. She could not get comfortable or sleep, Jannelle said.

Chris left with their son Connor to their Omaha hotel, but it wasn’t long before his phone was ringing and Jannelle was on the other end, telling him about Hailey’s restless night and urging him to return to the hospital to be with her.

When Chris arrived back at the hospital early the next morning, he tried to hug his daughter, but she only pushed him away.

“She was just annoyed,” Jannelle said. “Her chest hurt, her throat hurt, everything.”

The doctors put her on morphine and other drugs to sedate her and take away the pain.

By that afternoon, Hailey was unconscious.

She never opened her eyes again.

“She would give your hand a light little squeeze, but that was really about it,” Chris said. “She just kind of went away.”

The nurses and doctors knew there wasn’t much more time. They shut off the ventilators and all of the machines that made noise as her parents sat with her.

Hailey was a fighter, they’d said all along. They thought they would get her to Houston and everything would be fine.

But now, they knew it was time.

“We just kind of looked at each other, and we knew the answer,” Jannelle said. “She’s been through too much.”

——

Throughout Hailey’s journey, Jannelle had been optimistic that her daughter was going to spearhead a treatment for this disease.

And online, she connected with other parents whose kids were going through the same thing.

Hailey gave them hope.

“I was putting this all out there (on Facebook), partially because I wanted to give them hope that transplant was possible, and these kids that have this genetic condition, they’re not going to hit this barrier, and they’re going to be OK,” she said. “I truly believed Hailey was going to pioneer the transplant, and I just feel awful that they are having to watch us go through this.”

Eventually, Jannelle and Chris want to find ways to support research for the disease, but for now, they’re just trying to get through the days.

During his shifts working as a produce manager at Fareway grocery store, Chris is reminded of Hailey when he sees kids running through the store aisles. His friend has a daughter with the same energy and spunk that Hailey had.

When he looks at her, he remembers his healthy little girl who beat him in that bike race down the hill.

He hears her “Woohoo!”

At home, Connor, 7, has moved to an upstairs bedroom — away from Hailey’s. He doesn’t want to sleep in the basement without her.

The night before Hailey died, the Satterwhites tried to explain to Connor what was happening, but he didn’t understand.

He didn’t understand until they returned home from the hospital without his big sister.

“When both of us came home without her, it was more real than anything else,” Jannelle said.

Chris rides his motorcycle each day to Hailey’s grave. He doesn’t travel much. Being away from Carroll interrupts those visits.

Inside their house, he’s hung up the T-shirt he wore the last time he held Hailey.

He’ll never wash it.

——

Inside that hospital room in Omaha, family and friends had come down to see Hailey one last time as she lay in a hospital bed with her heart, kidneys and lungs deteriorating.

But it was just Chris and Jannelle sitting with her at 5:11 a.m. on that Thursday when Hailey’s failing lungs filled with air one last time.

In the hours leading up to that breath, Hailey would squeeze her parents’ hands gently when they asked if she could hear them.

They wanted desperately to hold on, but their love for their girl told them to let go.

Hailey faded to the sounds of their voices.

It’s OK to rest, they quietly repeated.

We know you’re tired.

It’s OK to go.