Four million babies are born in the United States each year; 500,000 are premature, or less than 34 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, or in hospital jargon, the NICU.
The NICU is where treatment is provided to gravely ill babies like Clara, those with genetic anomalies, or those born prematurely with critical medical needs.
Clara's story has a happy ending. "She is just wonderful. Today she is totaly healthy. Her 12th birthday was 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.
"I think specially here in the Unite States, we don't spend enough time talking about the problem of suffering. 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?" 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 complicit in the torture that I and others were doing with the baby. Another father in the book said to me '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." 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. She said, "I am hoping that people read my book and see that I am not taking about what's right or what's wrong, because I don't know what is right, what is wrong. I can't make decisions for other people. I just want us as a society to help young people learn more about what the outcomes are when their babies are born sick. So they can make choices that will be appropriate for these children. " Ruth Levy Guyer is a bioethics professor at Haverford College, an author of Baby at Risk published by Capital Books.
