Four million babies are born in the United States each year; 500,000 are premature, or less than 40 weeks old. Of these 'preemies,' 40 percent of those born between 28 and 32 weeks will never live independent lives. These "babies at risk" raise medical and ethical dilemmas for American families and communities.
In her new book, Baby at Risk, bioethics professor Ruth Levy Guyer describes the uncertain legacy of medical miracles for babies, families and society.
One of those miracles is Clara, born with a hole in her diaphragm. "She was going to have surgery the moment she was born to shove her internal organs down into her abdomen. And, they would hope that she would be okay." Clara spent three weeks in the neonatal intensive care unit, known as the NICU in hospital jargon.
The NICU is where treatment is provided to gravely ill babies like Clara, those with
genetic anomalies, and those born prematurely with critical medical needs.
Clara's story has a happy ending. "She just celebrated her 12th birthday this week and she is just a wonderful little girl, " says Ruth Levy Guyer.
But Guyer says the NICU can also be a curse. A baby may be saved only to face a life of prolonged suffering.
The author of Baby at Risk says not enough time is spent talking about this issue and poses some tough questions for the reader: "What does it mean to ask a baby to suffer? What does it mean to ask the family, the parents and the siblings and the grandparents and anybody else who cares about the baby to suffer as this baby is suffering?"
Guyer says parents must decide - often in the first hours or days of a baby's life - what makes sense for their child and for themselves, and then accept the consequences.
"One of the mothers in my book said to me, 'Every time I put a tube down my baby's throat to feed him, I felt that I was torturing him, and eventually I felt that I was completely complicit in the torture that I and others were doing with the baby."
Another father told her, "My baby was salvaged and not saved."
Guyer argues that palliative care that lets an extremely sick baby die a natural death is an option that needs to be discussed during pregnancy, but seldom is. She says neither parents nor communities are prepared for what can happen when things go very wrong at birth. "Communities are not aware that so many babies are being born at risk and they are not preparing ahead of time to educate children appropriately." Guyer argues that greater knowledge about these babies can help society better plan for their many needs.
Brian is a case in point. His parents describe him as a chubby baby with a sweet
knowing look who was born with a genetic anomaly. From six months to age two he suffered 100 brain seizures a day.
Guyer says Brian's parents, like many others with severely disabled children, struggled to find essential support services. "They had to fight for everything, for equipment, for health care, for special education, for all the things that Brian needed." Guyer says they would have benefited from respite care that was unavailable.
Brian died at age five. His father tells Guyer it was challenging to think about living a whole life with such limited capacity. He says, "It would have been challenging too, for us, had he survived. But I wish he did."
Guyer says babies like Brian have much to teach us and hopes that people who read her book will better understand the plight of at risk babies so that more appropriate choices can be made for them.