A young girl and a young woman who hold records for being the smallest surviving newborns are now doing fine and have developed normally, despite being born months premature and weighing about as much as a smart phone after birth, according to doctors where both babies were born.
Madeline Mann is now 22 and a college student. When she was born in 1989, at nearly 27 weeks, she was the world's smallest surviving infant at 9.9 oz. In 2004, Rumaisa Rahman, a twin, weighed just 9.2 oz when she was born at nearly 26 weeks and became the world's smallest surviving newborn. She still holds that record today.
In a follow-up study published in the journal Pediatrics, doctors at Loyola described the girls' progress since their birth. Both Madeline and Rumaisa developed normal motor and speech abilities and so far, have no chronic health problems. They are also both much smaller than peers their age.
In addition to being born extremely early, both babies were very low birth weight for their gestational ages. Normally, an 18-week-old fetus is around the weight they were when they were born. Although they are doing well, llead author Dr. Jonathan Muraskas, professor of neonatal-perinatal medicine at Loyola University Medical Center, stressed that despite their successes, Madeline and Rumaisa are very atypical of babies born that early and at weights that low.
"The normal outcomes that are somewhat of a miracle," said Muraskas. "We don't want the public to look at these two and have false expectations about outcomes."
"The vast majority of extremely pre-term infants who are also growth-restricted as these two were don't survive and those that do have major handicaps as well as ongoing health issues," said Dr. Deborah Campbell, director of neonatology at the Children's Hospital at Montefiore in the Bronx, N.Y.
Dominic Francis, a two-year-old from Cincinnati, is living with some of these health issues. Though he wasn't born as early as Madeline or Rumaisa, he was only 29 weeks old and weighed a little more than two pounds at birth.
He developed cerebral palsy after he was born, and now has trouble walking and communicating.
"He's a funny kid and he's a great kid, but in terms of mobility, he can't sit up on his own and he can't crawl," said his mother, Laura.
Because of a problem in his brain, he also had trouble making eye contact for about the first year. His brain, his mother explained, was "overwhelmed."
While she's happy to hear about rare cases like Madeline and Rumaisa, Francis also wants people to know they are the exception.
"The more common stories are the kids like my son who now face a lifetime of health and medical issues. I understand why the happy story gets the press, but the reality is that families of preemies have an uphill battle starting at birth," she said.
The chances of survival increase and the risk of complications decreases at higher gestational age, but children can have some problems associated with prematurity.
Zach Reisfeld is now 21, but was born at only 30 weeks old. Babies born at that age have a 95 percent chance of survival and less than a 5 percent chance of serious complications, according to Muraskas. Reisfeld works full-time at an electronics store and considers himself as normal as anyone else his age.
But he did struggle with some effects of his premature birth, including a sensory processing disorder that caused him to be hypersensitive to certain things touching him. Some data suggest this hypersensitivity is associated with prematurity.
"When I was a lot younger, I would have sensitivity to stuff," he said. "Like feeling the tag of a shirt against the back of my neck drove me nuts. My mom would notice all these holes in my shirts because I ripped off the tags."
He also has asthma, which Muraskas explained is more common in tiny babies who were on ventilators and oxygen after their birth. In addition, Reisfeld said he was diagnosed with attention-deficit hyperactivity disorder, which studies have shown premature infants are at higher risk for developing.
Gender, Steroids, Gestational Age and Education Likely Played a Role
"Females do better than males, and giving mothers steroids before they deliver a baby can accelerate the maturation of babies' lungs and brains in utero, which leads to better outcomes," said Muraskas.
Current recommendations are for mothers to receive steroids, which help the lungs develop, before pre-term birth when a fetus is between 24 and 34 weeks of age.
The fact that both babies were older than 25 weeks also played a role in their successful outcomes, he also said.
"The single best predictor for outcome as far as how well the brain is working is maternal educational attainment," said Dr. F. Sessions Cole, director of the division of newborn medicine at Washington University of St. Louis Children's Hospital.
While the study did not give any details on the mothers' backgrounds and the families did not want to be interviewed, Campbell said it's obvious these women were able to receive excellent perinatal care.
"If we're talking in terms of developmental outcome over time, parental education is synonymous with environment, meaning they're better able to provide good resources and access to care," she said.
Ethical Issues Surround Gestational Age
Muraskas and his colleagues wrote that a baby born older than 25 weeks old must be resuscitated because at that age, the baby is considered viable. Resuscitation is "obligatory on the ethical grounds of the 'best interests' of the newborn," they wrote.
The Supreme Court generally considers a fetus viable at around 24 weeks of age or when doctors make the determination of viability, which Cole explained sometimes dictates institutional policy on keeping certain premature newborns alive.
"Some institutions, in the interest of trying to put structure around these decisions, decide, regardless of the likelihood of survival, if a baby is born 16 weeks early or in that range, that baby would be given full life support regardless of parents' opinions," he said.
But he added that it may be better for these complex and delicate decisions to be made by the parents and health professionals involved on a case by case basis.
Advances in technology have made it possible for smaller babies to survive, wrote the authors. When a baby is near the age of questionable viability, they also say gender, gestational age and the use of steroids before birth should be considered as contributors to the ability to survive and do well.
And while the pressures of dealing with the health issues that often plague premature infants can be overwhelming, Francis wants other parents to know there is plenty of support out there.
"It's important for them to know they are not alone. There's help out there."