A N   E N Q U I R E R   S P E C I A L   R E P O R T

Keeping Evan alive, barely


Mercy or hope? Even his parents cannot agree

By Debra Jasper
and Spencer Hunt
The Cincinnati Enquirer

[photo]
Evan Ackley's brain scan sums up his fate. The light portions of the brain - more than 80 percent of it - show no activity. That's evidence he is severely brain damaged and probably will never have more than minimal functions. Evan was born three weeks premature and suffered a collapsed lung at 3 weeks old. But the scan can't predict how long he will live. With medical care, he could live for decades in this condition.
(Michael E. Keating photos)

[photo]
At 19 months, Evan floats in a therapeutic swimming pool and faces occupational therapist Kim Buscher. It's not clear if he can actually see or how much he feels. On Evan's weekly trips to Drake Center, the pool's 88-degree water relaxes his contracted body.
[photo]
Evan is held by occupational therapist Kim Buscher (right) during swim therapy at Drake Center with his mother, Kelly. Kelly's mother, Vicki Greene, adds encouragement and takes photos.
[photo]
Chip Ackley kisses the forehead of his son Evan.
Tears stream down Kelly Ackley's face when she looks at the photograph of her baby's brain.

Nearly 80 percent of the photo is gray-toned, meaning 2-year-old Evan is so brain-damaged that he can barely function.

"After I saw it, it was like someone hit me in the stomach," Ackley says, wiping her eyes and tightly clutching the photo from a computer brain scan. "The whole room just started spinning."

The dark gray picture paints a stark image of her son's future. There will be no Little League games or surprise birthday parties. No bedtime stories or colorful crayon sketches for the fridge. For Evan, there may never even be a first step or first word.

"Doctors say he won't ever walk or talk," Ackley says. "You look at him and he's so cute, and you get all choked up because you know. Deep down inside, you know."

While costly new drugs and surgeries are keeping alive critically ill babies who once would have died, medical advances can't help parents cope with the harsh realities of a child's prolonged illness.

Nor can doctors help parents make the ultimate extreme decision: When - or if - they should let their baby die.

Sometimes the choice is so agonizing that not even parents themselves can agree. In Evan's case, Ackley, 36, favors signing a DNR, or do-not-resuscitate order, so doctors won't revive him if he becomes terminally ill or one day just stops breathing.

"He's already been through so much," his mother says, rocking the little boy gently in her suburban Wyoming home. "I don't want to watch him suffer or be in pain or need a machine to breathe."

Ackley says doctors, nurses and specialists have poked, prodded and tested her son until it's almost too painful to watch. She worries about the invasiveness of the tests and how much her son feels. But she's not completely confident in her decision to let him go if he again gets too sick to survive on his own.

"It's easy to say you want a DNR but when you come down to it, what do you do?" she says. "This is our child we're talking about."

Her husband, Chip, 33, is opposed to a DNR and says doctors should try to save Evan no matter how sick he gets. "We can't get to a point where this is too much to do. As long as he's not in pain or not suffering, I don't think I'll ever give up," he says. "Besides, the choice to give up is not ours, it's Evan's. He will let us know if it's time."

Chip Ackley believes his son has an extraordinary will to live or he would be gone already. He believes that Evan knows he is deeply loved and that love might someday help him get better - despite the odds.

"It's going to be hard and stressful," the father says. "But there is always hope."

Born three weeks premature, Evan suffered a collapsed lung when he was just 3 weeks old. Doctors still don't know precisely what's wrong, but keeping the little boy alive has come with heavy emotional and financial costs.

So far, private insurance and a tax-funded health-care program have spent more than $700,000 on Evan's care in the past two years. His medicine alone costs $1,000 a month, and the state pays thousands of dollars each month for co-pays, special formula, equipment and at-home nursing.

That help wasn't easy to get. Private insurance didn't cover many of Evan's costs, so the Ackleys applied for Medicaid. They quickly found out that Chip Ackley, a manager at a Buffalo Wild Wings restaurant, made too much money to qualify.

The Ackleys got angry. Then they hired a lawyer.

Parents have to be willing to fight for their child, Chip Ackley says. "There is no American dream for people with kids like ours. For us, the dream is empty."

With legal backing, the Ackleys eventually won a special Medicaid waiver that did away with the income rules and covered Evan, paying for nurses and an aide to help care for the child at home.

The nurses work 56 hours a week helping feed the toddler through a tube in his stomach. They help monitor his special diet to control seizures. An aide goes with Kelly to take the boy to his neurologist and other specialists around Cincinnati.

"We just couldn't handle this on our own," Chip Ackley says. "I told one of the executives that I work with that this could happen to one of their kids, and even if they make $100,000 a year, it wouldn't be enough."

The Ackleys worry that next year they will be caught in a new round of budget cuts at the Bureau for Children with Medical Handicaps, which pays for part of Evan's care. They are prepared to fight again.

"We'll do whatever we have to do to take care of our family," Kelly Ackley says.

For now, the couple stay focused on raising their son, Max, 4, and keeping Evan as comfortable as possible. Each week, Kelly Ackley takes her boy to a special swimming pool at Drake Center where the 88-degree water relaxes his contracted body. On a good trip, he might slightly kick or lift a hand.

The family has learned to celebrate each small movement. Ackley's mom, Vicki Green of Finneytown, shows up to cheer and clap as her daughter slowly pulls Evan through the water. Like any doting grandmother, she snaps picture after picture.

But later, when Ackley is busy helping Evan get dressed, Green talks about her fears. "You worry about the future. You wonder if Evan will ever be able to do anything at all," she admits. "My daughter is strong, but it's a huge amount of stress. Sometimes it's just overwhelming."

She watches as Kelly takes Evan into her arms. His eyes roll back in his head and his body stiffens. He has little muscle control, it's unclear how much he feels, whether he can see or how much longer he can survive.

"There's a lot we don't know," Kelly Ackley says, looking at her son. "He could live 10 years or 20 years or someday soon, because of his brain injury, his heart could just forget to beat."



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Multimedia
In Their Own Words
Three parents speak out on how their child's situation affects various aspects of their lives. Hear their stories in their own words.
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Listen to these mothers' advice for other families:
Barb Steele
Debbie Martin
Melissa Hahn

Photo Galleries
A Photographer's Journal
Enquirer photographer Michael Keating tells the story of these families through his own words and photos.

The Hahn Family
Melissa and Randy Hahn are dealing with a daughter that has extensive brain damage, epilepsy and a seizure condition.

Your Choice
These situations are hypothetical, yet drawn from real experiences. What would you choose?

You are a physician, free to accept or refuse anyone as a patient. Do you treat someone who has a low-paying job that does not proved health insurance coverage?
You make the choice.

How much care should your critically ill newborn receive?

How do you pay when your insurance runs out?

You're a legislator. Where do you spend the money?

Did You Know?
Ohio hasn't increased its payments to doctors seeing Medicaid patients in three years, but nursing homes get automatic increases every year. It's state law. Nursing home costs increased 31 percent in five years to $2.2 billion, making it the health care program's single biggest expense in 2001.