Burnetta Herron-Mitchell was only 25 weeks pregnant when her water broke. The next few days at Loyola Hospital were filled with drugs to help the baby’s lungs develop and sheer terror for Herron-Mitchell, a surgeon who knew only too well what life could be like for a baby born too soon.
On Feb. 1, Rhys Mitchell entered the world at 26 weeks with a tiny cry, weighing just 1 pound, 13 ounces.
“I missed out on that joyful, happy moment that most people have, because I was so profoundly overcome with, she’s so early,” says Herron-Mitchell, of Chicago. “I knew all of the potential medical implications. I didn’t want to see her with a breathing tube. She was so small.”
Around the world, as technology and medical advances push the limits of viability for so-called “micropreemies,” doctors and parents find themselves grappling with a moral, ethical and financial quandary: How small is too small when it comes to extremely premature infants, and what level and type of care should be administered to the tiniest of the tiny?
Sometimes it’s not just whether they survive, but at what cost and what quality of life. The answers are rarely black and white.
In Japan, babies born at 22 weeks are considered viable and capable of sustaining life. Other countries advocate only “compassionate care” prior to 25 weeks gestation because of the high likelihood that the child will not survive.
Baby Rhys was one of the lucky ones – she’s now 31 weeks old and has shown no significant medical problems. She is expected to go home with Burnetta and her husband Rhet Mitchell this month.
In spite of all the advances in care for premature infants, the facts are this: when babies are born at 23 to 24 weeks, they have about a 50 to 60 percent chance of survival, but also a 50 to 60 percent chance of having a devastating handicap.
But if the pregnancy can be sustained for just a week longer, to 25 weeks, babies begin to have what neonatologist Dr. Jonathan Muraskas calls a “reasonable chance of survival.” Hold off a couple more weeks, until 27 weeks into the pregnancy, and you’re looking at survival rates that approach 90 percent, with only a 10 percent risk of a devastating handicap.
But those numbers belie one often-overlooked fact: It’s never easy.
Recently, Muraskas, co-medical director of Loyola University Medical Center’s neonatal ICU, was lead author on a study about two of the world’s tiniest preemies. Loyola holds the distinction of having delivered and/or cared for some of the world’s smallest surviving babies.
In 1989, Madeline Mann became the world’s smallest baby after she was born at Loyola 26 weeks into her mother’s pregnancy weighing 9.9 ounces-about the size of an iPhone. In 2004, Rumaisa Rahman set a Guinness World record after she also was born at Loyola 25 weeks into her mom’s pregnancy weighing 9.2 ounces. Remarkably, both girls survived without any major health problems.
In the media frenzy that followed the release earlier this year of Muraskas’ study on the two girls, much was made of the fact that they survived their early birth without any long-term effects.
But Muraskas, who has been a neonatologist at Loyola in Maywood for 25 years, is clear that these kinds of results are unusual and can set false expectations for parents whose premature children can face anything from cerebral palsy to mental retardation to blindness.
Before 1990, there was little debate about how small was too small and the lifelong effects of a baby born too soon because most low birth weight babies didn’t survive. But then a new drug called a Surfactant was approved to help babies’ lungs. That drug, combined in 1994 with steroids that crossed the placenta and helped unborn babies’ lungs and brains mature faster while still inside their mother, began increasing the survival rate of preemies, Muraskas says.
Normal pregnancies are 40 weeks; preterm is any child born before 37 weeks. In the United States, babies born at 22 weeks are not resuscitated. At 25 weeks, Muraskas says, every baby is resuscitated because more than 75 percent survive.
“The gray zone is 23-24 weeks, because despite all that technology, the survival rate might be better, but the outcomes are still not good,” Muraskas says.
Muraskas has had parents of babies born at 22 weeks say they want everything done to help their child survive. Other parents of children born at 23 or 24 weeks have asked that nothing aggressive be done.
“It’s a tough area. Maybe because Loyola’s Catholic and I’m Catholic, I err on the side of life,” Muraskas says. “But in this field, you have to have common sense; you have to have compassion and caring.”
In treating the smallest of preemies, Muraskas says he initiates treatment and then re-evaluates it regularly. “I use the common sense approach and tell parents, ‘Your baby’s going to tell us what to do,'” says Muraskas. “If your baby … is not responding to maximum therapy, all these different drugs, and high oxygen, I will say ‘Your little boy or girl is telling us he wants to go to heaven and we won’t step in the way.'”
But the other elephant in the room when it comes to micropreemies is the sheer cost of caring for such a medically fragile baby. The average NICU bill is $4,000-$5,000 a day. A baby that spends four months in the neonatal intensive care unit can easily run up a bill of half a million dollars.
“In Sweden, Norway, Finland, they don’t resuscitate a baby under 25 weeks. They say we’re going to use that money for prenatal care,” Muraskas says. “The economic thing, I have to say, can become a big issue. …As a country, people are starting to say, ‘I don’t know if we can afford this.’ It takes a lot of money to deal with multiple problems.”
But when Muraskas is caring for a tiny baby delivered at 24 or 25 or 26 weeks, he’s not worried about what insurance plan the parents have and whether or not it’s in the best interest of the United States to treat micropreemies.
“I just try to care for the babies. I do my best and pray.”
Liz DeCarlo is senior editor at Chicago Parent and the mother of three.