COLUMN: These parents give thanks mixed with a special kind of grief

'We realize how blessed we are'
COLUMN: They could never say thank you enough
COLUMN: They could never say thank you enough
COLUMN: They could never say thank you enough
Posted at 5:00 AM, Nov 24, 2016

CINCINNATI -- This Thanksgiving, Kim and Dewey Miller are thankful for someone they will never get the chance to meet: the child who had to die for their boy Blake to get a life-saving heart transplant.

"We realize how blessed we are," Dewey Miller told me after he, his wife and 14-year-old Blake made the three-hour drive from Hazard, Kentucky to Cincinnati Children's Hospital Medical Center to share their story.

"He was at the right place at the right time through every step," Miller said. "And he had the right people in place."

Despite all the talk about turkey, shopping and football, more than anything Thanksgiving is a celebration of gratitude.

For parents whose children are alive today because of an organ transplant, their gratitude is mixed with a special kind of grief.

Kim and Dewey Miller with Blake, center.

The Millers certainly feel it. So do Amanda and Jared Jones, whose daughter, Wednesday, had a heart transplant at Cincinnati's Children's when she was just 3 months old.

"You know what has to happen for this to happen," Jared Jones told me.

"And we had to be OK with it," Amanda Jones said. "We just kept saying, 'we're not going to think about it.' We tried to stay positive about it all."

I sat down with both families in the weeks leading up to Thanksgiving to better understand the depth of their gratitude.

'Your boy's not going to live'

Blake Neace has for years lived with his aunt and uncle, whom he calls Mom and Dew. He was a normal, healthy 13-year-old boy -- until the weekend he wasn't.

He played in a soccer game this past April 29 and started feeling bad afterward, Kim Miller told me. He woke up the next day and wasn't feeling any better.

Staff at a local clinic checked Blake and said he had a stomach virus and was dehydrated.

He stayed home from school the following Monday and Tuesday. He went back Wednesday but only stayed an hour before he felt too sick to be there.

Blake slept well that night so he went back to school the next day. But he had been there less than 20 minutes when the nurse called and said he was so weak that he almost passed out trying to walk up the steps.

Kim Miller took him back to the clinic where he began to turn an ash gray, and his legs became swollen.

"They stuck me 19 times trying to get an IV in me," Blake said.

The clinic thought Blake's liver was failing, and they told Miller to rush him to the hospital. By the time they got there, Blake couldn't walk at all.

A doctor at the local hospital ordered an echocardiogram. Kim Miller won't ever forget what happened next: "He came and sat beside me and said, 'Mom, we're in trouble. Your boy's not going to live.'"

Blake Neace before his first heart surgery.

Kim Miller and Blake went to the University of Kentucky Medical Center by ambulance while Dewey Miller followed. A cardiologist there did another echocardiogram and recommended that the Millers get Blake's siblings to the hospital to say goodbye.

"Me and my husband, we decided this is not going to happen," Kim Miller said.

The cardiologist said the only other option was to airlift Blake to Cincinnati Children's Hospital Medical Center, but he thought Blake was too weak to be sedated for doctors to insert a PIC line -- a form of intravenous access that can be used for prolonged periods of time.

The Millers gave the OK for the sedation, knowing it might kill Blake. But Blake did just fine, and the staff prepared him for the flight to Cincinnati Children's.

An orderly started to wheel Blake out of the room when the boy asked everyone to stop.

"He thanked everybody in the room who worked on him," Dewey Miller said. "He wouldn’t leave until he thanked them."

When asked why, Blake answered: "Because they saved me."

A doctor from Cincinnati Children's flew to UK Medical Center to be in the helicopter with Blake, and the treatments came quickly after that.

On May 10, Blake had surgery to implant a partial artificial to keep his heart pumping. Without that, he probably wouldn't have lived long enough for the transplant surgery, said Dr. David Morales, the surgeon at Cincinnati Children's who performed Blake's surgeries.

On May 26, the day Blake was supposed to graduate from eighth grade, he was listed as needing a transplant.

Dewey and Kim Miller with Blake, center.

"It's very scary. And not only is it scary, you think, 'how can I be so ungrateful and ask someone to die so that my child can live?'" Kim Miller said. "Then once you get that transplant call, you're so excited and then reality sets in. Some mama lost her baby."

Blake got his new heart on July 29 -- a date he considers his second birthday.

"Thank God for that donor," Kim Miller said. "And we have been well since. No problems."

The only bit of anxiety that Blake remembers was the few minutes before the transplant surgery. Since then, he said, he has felt pretty good.

"After I had the transplant," Blake said, "I grew four inches."

Life isn't 100 percent back to normal for Blake. He started his freshman year taking classes from home because infections can be so much more serious for him. He has medicine he will have to take for the rest of his life. And he will always have to worry about his body rejecting the organ that saved him.

But he and the Millers are grateful to have the chance to worry about all that.

"I'm thankful for the donor," Kim Miller said. "The donor's family. Their selflessness to give us what they had lost."

Her husband and Blake nodded in agreement. This Thanksgiving, they said, that's what they are most thankful for, too.

A parent's worst fear

Little Wednesday Jones was just 3 months old when she got sick.

The baby had come down with bronchiolitis and wasn't gaining weight as fast as the doctors wanted, so her parents were taking her for regular appointments to check her breathing and get her weighed.

After about a week of being sick, Wednesday got a chest x-ray that showed her heart was enlarged. The pediatrician's office sent the family straight to Cincinnati Children's.

Wednesday Jones before her surgery earlier this year.

After a three-hour echocardiogram, a group of doctors, nurses and a chaplain approached the young couple and told them little Wednesday was being moved to the intensive care unit.

After a few more tests, she was diagnosed with dilated cardiomyopathy. Just like Blake, little Wednesday needed a PIC line. Hers went into her arm and led to her heart.

"They started putting wires and IVs all over her," Amanda Jones said.

"I didn't even want to hold her. I felt like I was going to hurt her or pull one of those lines out," Jared Jones said.

"I refused," Amanda Jones said. "I held her."

Wednesday's name went on the heart transplant list on May 20. On Memorial Day, the Joneses got word that the hospital might have a heart that would be suitable.

The surgery took several hours. When the Joneses finally got to see Wednesday again, she had even more tubes and wires protruding from her tiny body.

Amanda finally got to hold her baby again the Thursday after surgery.

Jared and Amanda Jones with their daughter, Wednesday.

"I was afraid that I wasn't going to take my little girl home," she said, her eyes welling with tears.

It means so much to the Joneses that little Wednesday, now 9 months old, will be here for her first Thanksgiving.

They understand that she will have to take medication for the rest of her life and that sometimes a cold will mean they have to drive from their home near Eastgate all the way to Cincinnati Children's.

But all of that is just fine, they said.

"I don't think I could ever say thank you enough," Jared said.

'A new normal'

Heart transplants aren't exactly commonplace at Cincinnati Children's. But they aren't all that unusual either.

Since July 2011, surgeons there have performed about 50 heart transplants in pediatric patients, said Dr. Clifford Chin, co-director of the medical center's Advanced Heart Failure and Cardiomyopathy department.

Chin has been involved in caring for Blake and Wednesday, and both patients are doing very well after the surgeries they had earlier this year, he said.

Still, each child will always lead a very different life than they or their parents probably expected, he said.

"That does take a toll," he said. "What I tell patients now is that you're never going to have what anyone considers a normal life, but we're going to aim for a new normal."

The autograph heart that Wednesday got from the hospital.

Both the Miller and Jones families couldn't say enough good things about Cincinnati Children's and the care their children got there.

The doctors and nurses who provide the care aren't in it for the thanks, though.

"We get to take care of a lot of children who come from other places without hope, and that's what we can provide," said Morales, the doctor who performed Blake's surgeries. "I'm thankful to work in a place like that."

More information about Cincinnati Children's heart transplant program is available online.

Lucy May writes about the people, places and issues that define our region – to celebrate what makes the Tri-State great and also shine a spotlight on issues we need to address.

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