When Tracy Bonanato went to her doctor 20 weeks pregnant, she thought she’d get an ultrasound, hear that the baby looked great, be sent on her way and welcome a son about four months later.
Instead, the doctor sent her home on bed rest because her cervix was already opening. Two weeks later, the doctor sent her to the hospital. One week later, Nicholas – all 1 pound, 6 ounces of him – was born. He was just 23 weeks old.
“I was in a state of shock,” remembers Bonanato, 44, a pharmacist in Sicklerville, New Jersey. “I was numb. I didn’t know what to think.”
Understandably so. According to theAmerican College of Obstetricians and Gynecologists, a “full-term” baby is about 40 weeks old; infants born before 28 weeks are considered “extremely low gestational age,” says Dr. Edward Shepherd, section chief of neonatology at Nationwide Children’s Hospital. Preemies like Nicholas – between 22 and 24 weeks old – are the youngest of the young, riding the line between a fetus and a human being. Most hospitals don’t even intervene on the 22-week-olds, a study published in the New England Journal of Medicine found.
“We’re on the cutting edge of what’s doable medically,” says Dr. Amen Ness, clinical associate professor of obstetrics gynecology and maternal fetal medicine at Stanford University.
While babies younger than 28 weeks are rare – less than 1 percent of all births, Shepherd estimates – they’re an important population to study since their survival rates are low and their complication risk, associated health care costs and impact on families are high. “It’s a major area where improvements could make a big difference,” he says.
Living on the Edge
As a medical resident in the mid-1980s, Dr. Renate Savich, now chief of the Division of Neonatology and Newborn Services at Children’s of Mississippi in Jackson, learned that babies born before 28 weeks wouldn’t make it. But since the early 1990s, the youngest survivors have been between 22 and 23 weeks old – an age that experts believe is the lower threshold of human life. “Their lungs are right on the edge of having enough air sacs to survive,” says Shepherd, also an associate professor of clinical pediatrics at The Ohio State University Wexner Medical Center.
These extreme preemies can thank medical advances for their chance at life that wouldn’t have existed a few decades ago. For example, doctors now give women who are expected to deliver far too early a type of steroid that speeds up their baby’s lung development in utero. Hospitals also have more sophisticated ventilators to help preemies breathe, improved IV nutrition and better care in general, Shepherd says. “We’ve gotten really good at this,” he says. “More and more of these babies are surviving.”
But whether extreme preemies survive depends on a variety of factors, including their gender, birth weight, race and where they’re born. For example, girls are more likely to survive than boys, babies with higher birth weights have a better chance than lighter birth weights, black babies have better odds than white babies and babies born at larger hospitals well-equipped to deal with serious health problems tend to do better than those born at smaller hospitals focused on more routine care. “There’s a whole range of things that seem to be associated with success,” Shepherd says.
There’s also a range of how well the youngest preemies fare if and when they leave the hospital. Only about 3.4 percent of babies born at 22 weeks survive without severe impairment, while those who are born at 26 weeks have about a 75 percent shot at a normal life, according to a study published this year in the New England Journal of Medicine.
“The outcomes range from profound mental retardation and cerebral palsy to blindness to being absolutely normal,” says Savich, also a pediatrics professor at the University of Mississippi Medical Center. “The sicker they are in the NICU, the less chances of them being normal – but it’s not impossible, it’s a spectrum.” Even babies who make it to full term aren’t certain to go through life with a clean bill of health, she adds.
That’s why it’s important for clinicians to talk to families about more than statistics, Savich points out. While medical staff need to be straightforward with parents about their child’s potential outcomes, “giving them some hope and some stories about what could happen is very powerful,” she says.
When Time Stops
For 121 days, Bonanato and her husband all but lived at the hospital, where Nicholas stayed in the neonatal intensive care unit. He endured open heart surgery, eye surgery, a collapsed lung and several infections. “It’s a roller coaster,” Bonanato says. “There are good days and bad days, and it can change not just from day to day, but from hour to hour, and you just have to ride it out.” Here’s how experts suggest preemie parents have as smooth a ride as possible:
- Take it one step at a time.
Doctors used to ask parents of premature babies who might not survive to make life or death decisions about interventions – even before the baby was born. While some places still do that, most now resuscitate the baby before working with the family to make a final call. “We have very limited information before the baby is born, but we can actually very quickly gather information after the baby is born that will tell the parents in much more accurate detail how that particular baby is likely to do,” Shepherd says. For example, babies who make it 24 hours have better odds than their pre-birth odds, and those who make it a week are even better off. “All of a sudden, it’s a very different prognosis.”
That means parents don’t have to carry the weight of making one irreversible decision about the extent of their child’s care. “At each stage, you reassess if you push forward or not depending on the likelihood of success and positive outcomes,” Ness says. “That’s a really critical concept.”
- Speak up.
If a doctor uses a term you don’t understand, ask him or her to explain it another way. If he or she says your baby has a high likelihood of impairment, ask what that means. Is it life in a wheelchair? Blindness? Not being able to talk or go to school? Then, ask yourself what matters to you, Savich advises.
“If it’s ‘I want my baby to live no matter what shape my baby is in,’ [the medical staff] will want to be more aggressive,” she says. “If it’s another family who says, ‘The chance of significant brain damage isn’t something I want to take a chance on,’ you have to respect that.” Remember, she adds: “You’re the parent, and so your wishes are the most important.”
But keep in mind that the medical staff is rooting for your baby, too. “They come to know the baby and love the baby and care for the baby like it’s their own,” says Bonanato, who quickly got on a first-name basis with the team caring for Nicholas. “You really have to put your trust and faith in those nurses and doctors.”
- Take care of yourself (and your partner).
It can be easy to get burned out while watching your baby in limbo. “You’re going to be overwhelmed,” says Nick Hall, founder and president of Graham’s Foundation, which supports parents of premature babies. He knows firsthand: His twins were born 15 weeks early. “You just want to put your head in the sand and hope it’s going to go away.” For him, blogging helped. For his wife, getting up to speed on the research about premature babies was comforting. “We each found our own way to take care of ourselves and, over time, be able to be more of an advocate for our babies,” Hall says.
- Seek support.
More than blogging, talking with other parents of premature babies helped Hall and his wife through the toughest weeks. “They’re not trying to tell you, ‘This is what you can do, what you shouldn’t do.’ They can just listen and understand,” he says. “Just being able to talk to other parents is super helpful.”
That’s why they created their foundation: to empower parents of premature babies in part by connecting them with others who have been there. They even have “parent mentors” available and care packages friends and family can send to neonatal intensive care units. Hospitals often have support groups, volunteers and trained mentors to help too. “You’re not alone,” Hall says.
- Know you can make a difference …
During her many months in the hospital, Bonanato passed the time watching Nicholas, kissing him when it was safe, and eventually holding him for hours. As he grew stronger, she could change his diaper and give him a bath. Such interaction is not only important for parents emotionally, but also for the infants’ outcomes, Shepherd says. “Babies do better when they’re around their parents,” he says. ”How the baby is cared for makes a big difference.”
That’s the case if and when they leave the hospital, too. For instance, kids who see a pediatrician regularly, receive interventions early for any potential medical complications, have strong support at home and are enrolled in a good school system probably have a better shot at thriving as they grow up, Shepherd says. Hall’s daughter, Reese, for instance, is benefiting from a Montessori school and performs in plays. Nicholas, meanwhile, is now an 8-year-old who loves Legos, “Star Wars” and everything his older brother endorses. So far, the most significant long-term effect is his poor vision, Bonanato says. “He’s definitely a fighter.”
- … but it’s not your fault.
Parents shouldn’t blame themselves if their babies don’t make it or have lifelong consequences. “Sometimes, really sad things happen, and there’s nothing you can do about it,” Savich says, “but know you did your best.”
For Hall, whose son, Graham, passed away after 45 days in the hospital, creating a foundation helped him and his wife turn their pain into purpose. “What I did was find meaning in my son’s life,” he says. “That’s what’s helped us heal.”