OP-ED CONTRIBUTOR

End of Life, at Birth

By APRIL R. DWORETZ
Published: August 4, 2013 248 Comments
ATLANTA FIFTY years ago this Wednesday, Americans were gripped by the fate of a baby
Patrick Bouvier Kennedy, the first child born to a sitting president since the 19th century, and
John F. Kennedys last. He arrived on Aug. 7, 1963, five and a half weeks premature. Despite
medical heroics, including the use of a hyperbaric oxygen chamber, he died 39 hours later.
Neonatal care has improved greatly since then. Were he born today, Patrick, who was delivered
at 34 weeks gestation, would very likely survive and have a healthy life, too.
For all the biomedical advances, though, the key ethical problems surrounding premature birth
remain. Today, babies as much as 11 weeks younger than Patrick can be saved at birth. The
problem is that their prognoses are often much worse than his would have been.
I am a neonatologist. I save babies. Most of them, especially those born after 28 weeks, will at
most suffer mild or moderate disabilities. But of those born before 28 weeks 30,000 of the
half million babies born prematurely each year in this country many will have serious
physical, social or cognitive problems.
Consider that a one-pound, one-ounce girl born unexpectedly at 23 weeks gestation has a 92
percent chance of dying early or having moderate to severe neurodevelopmental impairment.
Most extremely premature babies will experience at least one complication bleeding in the
brain, infections,intestinal perforation, severe lung damage before discharge. Many will need
treatment long after birth, sometimes for life, at great financial and emotional cost to them and
those around them.
A few months ago I cared for just such a child. Lets call her Miracle. She was born at 23 weeks
gestation and weighed a little over a pound. Despite the bleak prognosis, her parents asked that
we resuscitate her in the delivery room.
So we did. But over the next eight weeks, to keep her alive, we had to prick Miracles heel so
many times she developed scarring. We suctioned her trachea hundreds of times. We put tubes
through her mouth and into her stomach, we stabbed her again and again to insert IVs, and we
took blood from her and then transfused blood back. We gave herantibiotics for two severe
infections.
Each of these events created suffering, for Miracle and her parents. Her mother visited daily and
developed an anxiety disorder. Her father came in only once a week, the pain and sadness was so
great.
After eight weeks, Miracle came off the ventilator we had put her on. But three days later we had
to turn it back on, and it was possible she would die or remain on the ventilator permanently if
we didnt give her steroids, which can have side effects as serious ascerebral palsy. Her mother
opted for the steroids. But Miracles father was angry. He muttered to me: Why do you do this?
Why do you keep these babies alive?
Ive been thinking about that question for decades and havent found a simple answer. Some
parents believe that withholding or withdrawing life-sustaining treatment will prevent their infant
from suffering and living a life not worth living; others consider it murder. Some families soar in
caring for their disabled kids; others disintegrate.
Ultimately, parents have the right to decide, but we physicians must help them make informed
decisions. I asked Miracles father whether anyone had talked to him about resuscitating Miracle

before she was born. He vaguely remembered a conversation, but hadnt understood what
treating such a tiny premature baby meant.
And nobody talked to him after Miracle was born about continuing life-sustaining treatment. In
fact, he had gotten to her two-month birthday without realizing that her suffering might end in
death. We had updated his wife, but she didnt like to hear bad news, and didnt tell him.
Luckily, the news has improved. Miracle is off the ventilator and will likely survive to be
discharged, though she will suffer from chronic lung disease.
Even so, we need to make sure both parents are always kept part of the discussion, to ensure we
have their informed consent throughout treatment. It cant be just one conversation.
More broadly, when in the first trimester obstetricians talk with pregnant women and their
partners about testing for genetic anomalies, they should include discussion of values and
attitudes toward life, death and disability, or at least recommend such discussions. Certainly
parents at high risk of giving birth to premature babies, or to babies with severe congenital
defects, should receive such counseling, including from neonatologists and other specialists.
Sometimes, I think we doctors need to do more than inform. On occasion, Ive offered to make a
life-or-death decision for parents. If they agree, they are essentially making the decision, but are
shifting the burden to me. Its harder for parents to say, I unplugged my baby, than to let the
doctor do it.
Our culture is slowly growing more comfortable talking about end-of-life issues as they relate to
the elderly: whether to allow a natural death or prolong life even if it means suffering.
In my world, though, the surrogate decision makers are young parents of infants like Miracle.
And they are still completely unprepared. Its time we broaden the discussion to include them.
April R. Dworetz is an assistant professor of pediatrics, specializing in neonatology, at Emory
University.