September 27, 2018

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

The morning sun had not yet crept through the blinds when Jannelle and Chris Satterwhite sat together at the side of their daughter Hailey’s hospital bed.

Nothing — not even the exhaustion they felt from another sleepless night — could draw them from her side.

As the night faded into early morning, Jannelle continued to whisper to her young daughter. There was something she needed to say.

“I kept telling her, ‘It’s OK,’ ” Jannelle said. “ ‘We know you’re tired. It’s OK to rest.’ ”

In her own way, Jannelle was telling her daughter it was time to let go.

It was OK to die.

The past few years, Hailey had become what her dad called a “little rabbit” — always being poked, prodded, examined, tested. Something was always wrong — her lungs, sinuses, stomach. She was always in pain.

Now, she couldn’t breathe.

“I just wanted her to know that she was going to be OK,” Jannelle said.

Your bedroom will always be yours.

We’ll keep your brother out of your toys.

“We just wanted her to be OK.”

Hailey Satterwhite, 10, the daughter of Jannelle and Chris Satterwhite of Carroll, died July 5 from a rare, progressive disorder that she was born with and destroyed her lungs.

Hailey was a healthy baby, Jannelle said. It wasn’t until a warm Carroll February in 2012 when she was 4 that they noticed something was wrong.

When they went to play at a park, other kids took advantage of the unusually warm day to run around in their short sleeves, but Hailey stayed on the bench with her parents, bundled up.

They took her to a doctor, who referred her to Children’s Hospital and Medical Center in Omaha.

Hailey’s school nurse thought she might be anemic, Chris said.

Doctors determined Hailey had aplastic anemia, a rare condition when the body stops reproducing enough new blood cells, a result of bone marrow damage. She needed to travel to Omaha every week for platelet transfusions.

They learned she needed a bone marrow transplant, and her younger brother, Connor — just an infant at the time — was a match.

They waited until he was 19 months old and completed the transplant in the fall. Because of the time it took her to recover, Hailey ended up starting kindergarten in Carroll a year late.

But then, for a while, she was doing well. She only had to go back to the hospital for a few follow-up appointments, or when she had a fever.

It seemed like everything would be OK.

——

For two years after the transplant, Hailey was healthy and happy.

“She was always smiling or being weird or ridiculous,” Chris said. “She was always something. She always had some plan or something she was up to at all times.”

Her favorite things were purple and pink and motorcycle rides with her dad.

“I said this a thousand times, she is just as pretty as her mom, but she was exactly like me,” Chris said. “She is my carbon copy. We did so many things the exact same way — the way we acted, our normal everyday shenanigans. She started saying ‘shenanigan,’ too. She was using my word.”

Later, when everything started to fall apart, she lost interest in those motorcycle rides with Dad. Chris dreamed up ways to make it work even as Hailey got sicker — even figuring out a way to rig up her oxygen tank in his saddlebags — but Hailey no longer wanted to go.

“I just think she was probably scared,” Chris said. “She couldn’t do things. She had limitations that she never had before.”

In the third grade, Hailey got a cough and became congested. A sinus specialist in Omaha enlarged her sinus cavities and created a drainage when her sinuses couldn’t drain on their own.

After that, her frequent colds and coughs never really went away again. Every time the family prepared to go somewhere, they’d check — not if she had a cough, because she always did, but how bad it was.

“She had different coughs,” Jannelle said. “They were junky, or dry or harsh. That’s kind of how we gauged if she caught a bug or not.”

So they brought in a pulmonologist, a doctor who specializes in diseases involving the respiratory tract. He did X-ray after X-ray but couldn’t figure out what was wrong.

——

It wasn’t until the end of 2017, when the doctor returned from a seminar where he had learned about dyskeratosis congenita, a rare genetic condition, that a skin biopsy confirmed Hailey had the disease.

That was their answer, the reason for all the other conditions. This one rare disease had caused the health problems that had plagued Hailey since she was a toddler.

The constant cough, the shortness of breath, the thin fingernails, the blood transfusions, the chemo for the bone marrow damage, the bone marrow transplant, the sinus surgery, the constant doctor’s appointments, the problems they thought they were solving one by one — this was the cause, this disease that was lying in wait to slowly take her life.

“She had three, maybe four years of just good, solid being a kid,” Chris said. “We thought we were done. All of that stuff just ended up being really small symptoms of this disease.”

When Hailey was diagnosed, Chris looked online for answers. There were few details available, and what little information he found wasn’t hopeful.

He learned that someone with the disease is not expected to live much longer than 16. Hailey was 10.

“You’re looking at all of this stuff. ... Honestly, the first thing in my mind was, my daughter’s going to die,” he said. “That was the first thing in my mind. I was just freaked out.”

He scrolled and read, scrolled and read. So many of the symptoms he read about were familiar, challenges they’d tackled one by one throughout Hailey’s life without realizing they all had been caused by this one disease.

The ever-present cough had been a significant clue to discovering her illness, and it eventually became her greatest challenge.

They discovered Hailey’s true affliction a few weeks before this past Christmas.

They celebrated the holidays with family and friends and kept the bad news secret until the first days of this year.