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Live or let die: A choice of sorrows

Sickest babies force decisions on barest life and unbearable burdens

By Debra Jasper
and Spencer Hunt
The Cincinnati Enquirer

Doctors suggested to Ajia and Jarvis Swanson that they could let their severely disabled daughter Jhanae die. They decided against it.
(Michael E. Keating photos)

Nurse Linda King covers Jhanae as she sits in the family’s living room. Jhanae uses a ventilator and cannot walk, talk or breathe on her own.
Ajia Swanson contemplates as she talks about her daughter. The Swansons consider Jhanae a gift from God, but her need for contant care and the financial and emotional burdens have changed their lives drastically.
In her mind, Ajia Swanson sees her 3-year-old daughter, Jhanae, running through a park in her little yellow bobby socks and Mickey Mouse tennis shoes, laughing and playing with friends.

But in her living room, Swanson sees Jhanae as she really is, wearing the little yellow socks and tennis shoes but strapped to a tiny wheelchair, her breath coming in loud, even gasps as a ventilator forces air into her lungs.

Jhanae's face is so swollen that her eyes form only slits. Her body is so contracted that she wears splints to force her fists open. On a good day, she coos or gurgles. But she doesn't laugh or play as she does in her mother's dreams.

She never will.

"We were thinking that with therapy or brain surgery, she could come out of whatever it was she was in. That with hope and prayer she'd be OK," Swanson says. "Instead, she breathes five minutes tops on her own without turning blue."

It costs more than $100,000 a year to keep Jhanae hooked to the ventilator and to give her nearly around-the-clock nursing care. She could live for years - even decades. And there are thousands of Jhanaes existing in Greater Cincinnati, Northern Kentucky and beyond.

New drugs and technologies are saving more and more tiny babies who once would have died with severe medical problems. But while doctors can keep babies alive, they can't always keep them healthy. Doctors still don't know how to stop fragile blood vessels in the brain from breaking or bleeding, causing mental retardation or crippling lifelong disabilities.

That means thousands of families are sent home from hospitals every year with babies who will never outgrow severe health problems. Over their lifetimes, they'll require millions of dollars for doctors, nurses, drugs, equipment and hospital care - plus every ounce of energy and every minute of time their parents can give.

Families often crumble under the burden, falling into depression, bankruptcy or divorce.

The emotional and financial costs are so high that some health experts ask whether doctors and society should offer parents the most extreme choice of all - an option to let their severely ill children die. Peter Singer, a bioethicist and Princeton University professor, is one of the loudest supporters of this controversial idea.

"In some circumstances I think parents should, in consultation with their doctors, be able to ensure that their severely disabled newborn baby dies," Singer says.

"What is totally unconscionable, I believe, is for the law or the medical establishment to ensure that severely disabled infants survive, even when parents do not think this is for the best, and then fail to provide them with the support and resources they need to make their child's life as good as it can possibly be."

Did You Know?
Half of all premature births in this country happen for no known reason and can't be predicted. Doctors know that older women, smokers and those who abuse drugs and alcohol are at higher risk for problem pregnancies. Pre-natal tests can provide warnings, too. But in many cases, doctors can't tell for sure if an expectant mother who does everything right will carry her baby to term.

"Most people don't have any risk factors, unfortunately," says Dr. Philip Samuels, a professor specializing in high-risk obstetrics at Ohio State University. "They (premature births) come without warning."

They're coming more often, too. The number of premature births in this country has increased 27 percent since 1981, according to the March of Dimes. One reason: Increased use of fertility drugs that result in multiple, early births.

The right to live or die

That's what happened in Texas, where doctors kept a severely ill, 1-pound baby alive even though the parents asked them not to take heroic measures to save her.

Mark and Karla Miller sued the hospital. They said their daughter, now 13, needs millions of dollars in frequent surgeries and constant medical care.

The Millers ran out of insurance and wanted the hospital to pay those bills. But the Texas Supreme Court ruled in September that doctors can save a child's life - even if the parents ask them not to - without being responsible for future medical expenses.

Marc Spindelman, a law professor at Ohio State University and an expert in bioethics, says the controversial case illustrates some of the most difficult moral questions faced by society today.

"People recoil from the notion that severely ill and disabled newborns don't have the same right to live because of their quality of life. How do we define quality? How do we define disabled? When is the quality of life so low and the burden on families so high that we should allow a life to be ended?"

Spindelman says policy makers' failure to address this issue is forcing families to make extreme choices. "We say we are giving them a choice, but what kind of choice is it to tell parents, 'Either save your child or sacrifice your own life by giving up all of your money, all your time and all your energy.' "

Laws in Ohio, Kentucky and 36 other states don't specify whether parents have the right to let a severely ill child die. Those decisions are made privately between families and their doctors.

But thousands of parents must come to terms with the birth of a medically fragile infant. In Greater Cincinnati and Northern Kentucky, more than 360 babies are born each year weighing less than 3 pounds, 5 ounces. Many of those infants go home severely ill.

Dr. Beth Haberman, a neonatologist who works with premature infants at Cincinnati Children's Hospital Medical Center, says parents rarely get the help they need. "It's hugely frustrating. We're saving all these kids, but we need to be helping their families take care of them," she says. "There are lots of things that I would do different to take better care of the child, but the parents can't afford it."

Haberman says private insurance often doesn't pay for items like $100-a-bottle special formula. Government balks at paying such staggering costs, too.

While the birth of a typical healthy baby costs $4,300, care for a premature infant costs an average $58,000. In one case in 2001, Ohio paid nearly $500,000 to care for just one premature baby.

The state typically spends $103,000 a year on an infant with a ventilator and $100,000 on a baby who is tube fed. It spends $39,000 a year on someone with cerebral palsy and $48,600 on a child who is paralyzed.

Gov. Bob Taft and other state officials say they struggle to find enough tax money to cover such incredibly expensive medical bills. "We pay $2.5 billion a year for health care for children. We just have huge costs," Taft says.

Spindelman says the state is forced to make extreme choices, too.

"Politicians start to look God-like when what is being decided politically is who gets care and who doesn't," he says. "To many people, there is something cruel about providing enough care to save children and then washing your hands of them."

A life-changing choice

Even if parents are allowed to decide whether doctors should save a child, how can they choose?

Deciding whether to let their baby die was the most agonizing decision the Swansons faced shortly after Jhanae was born 2 1/2 months premature, with a brain abnormality. Doctors at Cincinnati Children's Hospital asked the Swansons if they wanted to take Jhanae off life-support and let her die.

It was a horrifying moment. Surely, they thought, brain surgery, medical advances, something, could transform their fragile newborn into a normal little girl. They grasped at any slim hope. They prayed for any miracle.

"The doctor told us, 'If it were my daughter, I'd take her off the vent, hold her in my arms and let her pass,'" recalls Jhanae's dad, Jarvis Swanson, 27. "I said, 'I don't think I'm ready to make that decision. Even with the ventilator, when God is ready, she will go."

It was a decision that drastically changed the Swansons' lives.

The couple, who live in North Fairmount, must constantly suction saliva from Jhanae's mouth so she doesn't choke to death. They must turn her every few hours to keep her from developing painful bedsores. They must feed her through a tube and watch for seizures that could develop any minute. They must take her on a city bus several times a month to Children's Hospital.

"When she was born, I broke down sitting at her bedside. I was only 20 years old, and I just never thought something like this would happen to me," Ajia Swanson says. "I thought I'd have a child that I could take to the park and do things with, but instead I'm spending my days doing things like changing the filter on her ventilator."

Swanson also spends her days fighting to convince government and insurance officials to pay for Jhanae's medicine, doctor visits, a specially designed $5,000 crib, diapers, mouth swabs and a thousand other needs.

She feels caught in a no-win game: Jarvis Swanson's $26,000-a-year income as an insurance claims adjuster only begins to pay the bills. But if she goes back to work as a nurse, much of her salary will just be spent on day care for their 8-month-old son - and she could lose the Medicaid benefits that pay for so much.

"No matter how much money you make, there is always some new expense that has to be paid," she says. "And for people on the low end of the totem poll, there is no way you can do this on your own."

The Swansons talked to dozens of agencies before they got benefits: The Ohio Bureau for Children with Medical Handicaps, the Hamilton County Department of Job and Family Services, the Hamilton County Mental Retardation Board, the Social Security office. But keeping assistance is an exhausting, never-ending fight.

"They'll cut our benefits, and we argue over it and eventually we get stuff reinstated," Swanson says. "I've needed a lot of help. I've never seen anyone with the amount of equipment and medical needs that Jhanae has. Even at Children's Hospital, where they are used to seeing sick children all the time, people stop and stare at her."

'An angel on earth'

Medicaid finally agreed to pay for nurses to watch over Jhanae on weekdays, late at night and some weekends. But Swanson takes her daughter to doctor appointments, schedules visits with a physical therapist, orders supplies and cares for her baby boy, too.

She also worries about balancing the needs of the rest of her family. Swanson has to call up to six months ahead to reserve special day care for Jhanae. The couple rarely take vacations or go out with friends. They can't recall the last time they just went out to dinner.

Doctors have asked the couple if they want to sign a "DNR" or do-not-resuscitate order in case Jhanae has a seizure or other medical crisis.

They said no. "We asked ourselves, 'If we do resuscitate, are we doing this for us so we don't have the guilt of letting her go? And if we don't, is it for us because we don't want the burden of taking care of her?" Jarvis Swanson explains. "We concluded God will take her when she's ready, whether she's on a ventilator or not."

When times are tough, Ajia Swanson says she and her husband remind themselves that Jhanae is a blessing.

"Sometimes I get exhausted and think, 'I can't do this anymore,' " she says, the quiet in the living room pierced only by Jhanae's labored breathing. "But then I know inside that she can feel that we love her, and that's what really matters. So we just keep on going."

She strokes Jhanae's swollen cheek. "I think she was a gift from God, and He works on things with us through her," the mother says. "I look at her and see an angel on earth."

Back to Extreme Choices
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.