COLUMBIA — At age 11, A'Taliya Bass has already started to write her first book. She calls it "Forget the Looks," a collection of her thoughts about inclusion and acceptance.
A'Taliya is smart, but she's shy. Some of her classmates call her nerdy because she likes to lose herself in stories. For her last birthday, all she asked for were books.
She is one of the best violinists in the Mizzou String Project. She also won second place in the Columbia Science Fair for an experiment on ways to slow the oxidation of an apple.
If fifth-grade academics are any indicator, her future seems bright.
But when A'Taliya was born, doctors didn't know if she would make it. Born at 27 weeks, her fists were as small as seedless grapes. Weighing just under 2 pounds, there was a 20 percent chance she wouldn't survive.
If she did beat the odds, there was also a fair chance she would endure life-long disabilities. Difficulty breathing, eating, seeing and hearing, or cerebral palsy are common consequences of premature birth. Eleven years ago, more than 10 percent of babies born at 27 weeks had a severe disability, as well as a 30 percent chance of having a low IQ.
But A'Taliya survived, and she has thrived. Medical advancements in the last 50 years have dramatically increased the survival rate for infants born up to 4 1/2 months prematurely. And children like A'Taliya — born two months early or more — are the key benefactors, reaching a current survival rate of 88 percent.
Advancements are significant
Of the 15 million babies born prematurely each year, about 1 million — 7 percent — do not survive.
In the 1950s, 88 percent of infants born at 2 pounds, 3 ounces or less did not survive, according to the National Center for Health Statistics. Pre-term infants during that period were generally recorded in weight, rather than gestational duration.
Controlled hospital conditions and advanced monitoring systems are keys to the increased survival rate. High-tech cribs known as Isolettes not only keep the babies warm, but also monitor weight and vital signs. Oxygen treatments can be delivered into the Isolettes if babies are breathing on their own, or delivered directly through tubes into the underdeveloped lungs of infants.
After A'Taliya was born in 2005 at Boone Hospital, she remained for two months in a temperature-controlled, computer-monitored crib. She breathed through an airway hooked to a ventilator and was fed through a tube.
Heart, oxygenation and carbon dioxide monitors were attached to her paper-thin skin. Two IVs were slipped through her belly button, reaching beneath her heart, supplying dextrose sugar, protein and fat to keep her growing.
Yet despite all this technology, in 2005, babies of her development remained on the fringe of survivability.
"Eleven years ago, 27-weekers were still a really challenging group of babies to take care of," said Tim O'Connor, a neonatologist at Boone Hospital Center.
Babies born at less than 24 weeks of pregnancy are still at considerable risk, even though medical science has made significant strides since the 1960s at keeping premature babies alive and at preventing disabilities.
Neonatal care received serious attention in the United States around 1963, when the newborn son of President John F. Kennedy died after being born 5 1/2 weeks early. The baby boy weighed 4 pounds, 10.5 ounces, a little more than half the weight of an average newborn and about 2.8 pounds heavier than A'Taliya was at birth.
Patrick Bouvier Kennedy died of a breathing problem known as respiratory distress syndrome, and modern breathing treatments would likely have saved him.
"(Newborns dying at that age are) almost unheard of these days," O'Connor said. "That baby was part of the push to say, 'Why is it these babies can't survive?'"
By the 1970s, it was common for 28-week-old newborns to be successfully treated, according to the Minnesota Medical Association. The first neonatal ventilators had been developed to assist breathing. Improvements had been made in monitoring blood oxygen levels, heart rate and blood pressure.
Ultrasounds to look for bleeding in the brain had been developed, and by the end of that decade, 50 percent of infants born at 27 weeks and about 2 pounds — as A'Taliya was — were likely to survive.
In the 1980s, availability of neonatal medical care greatly expanded nationwide. Skin-to-skin therapy with parents, known as kangaroo care, was introduced. During this period, A'Taliya's chances of survival would have been around 50 percent.
By the 1990s, the survival of pre-term newborns between 23 to 25 weeks became possible with advanced respiratory treatments, pre-natal steroids and new technologies in monitoring vital signs, among other medical improvements.
In 2012, the survival rate for pre-term births of 22 to 28 weeks had reached 79 percent, up from 70 percent in 1993, according to a study published in The Journal of the American Medical Association.
Care can be costly
A premature birth can cost up to hundreds of thousands of dollars, depending on the level of treatment, O'Connor said. Critics of medical intervention in very pre-term infants point to the high cost of saving their lives.
In 2007, the Institute of Medicine reported pre-mature births cost the United States $26.2 billion each year. The expenses were split — $16.9 billion for medical and health care, $5.7 billion in lost household and labor market productivity associated with disabilities, and $1.9 billion for labor and delivery. Another $1.1 billion goes for special education services and $611 million toward programs for children as old as 3 with disabilities and developmental delays.
A 2012 study published by the American Journal of Obstetrics Gynecology found that if all of the world's infants born between 22 and 23 weeks and 6 days — considered the limit of viability — were resuscitated, it would add $300 million more to the world's health-care systems costs than current practices. Those practices now recommend limiting care to comfort for babies with especially bleak outlooks.
"The earlier you are, the more resources you use," said MU Women's and Children's Hospital neonatologist John Pardalos. "It's not just the cost in the hospital, it's the long-term costs."
In countries with socialized medicine, money allocated to health care is established for the entire population, and governments must balance the needs of the entire nation. This limits the amount of money that can be spent on infants on the edge of survival. In the United Kingdom, for example, doctors are asked to limit treatment of babies born at less than 23 weeks, with their parents' assent.
Limiting the resuscitation of extremely pre-term newborns is not restricted to nations with socialized medicine. In the Netherlands, where health care is privatized and insurance is mandatory, babies born before 25 weeks who can't survive without machines are euthanized or allowed to die in the delivery room, unless the parents request treatment.
In the United States, where health-care costs are typically shared between patients and insurance providers, parents and doctors must decide how much cost, suffering and risk the family can manage.
In 2002, Congress passed the Born-Alive Infant Protection Act, which safeguarded the life of any newborn showing vital signs. The act prevents doctors from euthanizing viable pre-term infants, which O'Connor said has never been a widespread issue. He and many neonatologists believe the act was a means for limiting late-term abortions.
But the act also gives doctors medical efficacy to only provide comfort care if the baby's outlook is hopeless.
A 2007 article in the Journal of Medical Ethics spoke to this issue: "Few (doctors) insist that when life can be prolonged for however a short time, it always must be. What the baby, older child or adult is entitled to, morally and legally, is appropriate care. Neonatal intensive care is invasive and burdensome."
According the the article, infants could be subjected to about 200 painful procedures in just two weeks. When treatment becomes more suffering than hope for survival, prolonging care is regarded as inhumane.
Pain is more intense in premature newborns, Pardalos said. The communication between body and brain is delayed, making pain also last longer. According to a 2007 article in Seminars for Perinatology, this pain was infrequently recognized or treated until 1980 because infants are unable to tell doctors where or how much it hurts. Today, pain is assessed through heart rate, blood pressure, breathing rate and blood oxygen levels.
Morphine is the infants' most common source of relief. The University of Arkansas' NEOPAIN trial found that the opiate is generally safe when used with caution but causes decreased blood pressure in infants born before 27 weeks in the womb. Researchers in France, however, have questioned morphine's ability to relieve the intense pain of surgery.
Some parents have deemed these trials too much for a baby to endure, and a few have taken measures into their own hands. A Michigan dermatologist, Dr. Gregory Messenger, was acquitted of manslaughter in 1995 after he turned off life support systems to his 15-week premature son without the knowledge of the medical staff.
When the infant was born, the medical staff members insisted on placing the hand-sized infant on a respirator, in accordance with hospital protocol. Messenger and his wife, however, had asked doctors not to resuscitate the boy, with Messenger quoted as saying he did not want doctors to do painful "experiments."
In Missouri, as in most states, parents and physicians are left to decide the destiny of new lives on the mortal fringe. Pardalos said he works to educate parents and enable them to make informed decisions.
"I personally believe in giving the babies a chance," he said. "So, 22-, 23-, 24-weekers, if the family wants it, I'm happy to help try to give the family a chance."
Risks can be severe
Pardalos said he tries to ensure that parents are fully aware of the potential outcomes. The child could be physically or mentally handicapped, sometimes severely so.
In severe cases, "someone will have to change and feed (him or her) and he or she will never be able to walk without a wheelchair," Pardalos said. "If that's what they want for their baby, I don't feel like I'm the type of person that can say, no you can't have that.”
If the parents cannot decide, O'Connor said the medical staff will always resuscitate the infant, unless the baby is too small to use available equipment, like tracheal tubes to assist breathing. If a baby's heart stops and the ribs are too fragile for chest compression, Pardalos will assess the parents' willingness to let the infant go.
Although O'Conner and Pardalos said they always try to give parents a clear picture of the risks, this has not always been the case with all physicians.
According to the Official Journal of the American Academy of Pediatrics, a procedure known as the Surfactant, Positive Pressure, and Oxygenation Randomized Trial (SUPPORT) was developed in 2004 to test and determine the safest level of oxygen saturation for premature infants.
Oxygen saturation is measured by the amount of oxygen absorbed by hemoglobin in the blood. Some infants were saturated at moderate levels, around 80 percent saturation, and others higher levels of 90 percent.
O'Connor said it was an important study, but the researchers were heavily criticized for how parental consent was obtained.
The federal Office for Human Research Protections found the consent process for the research to have violated federal regulations by inadequately informing parents about the "reasonably foreseeable risks" of death or blindness. The New York Times editorial board concurred, calling the debacle startling and deplorable.
In 2013, the Public Citizen Health Research Group wrote a letter to then U.S. Secretary of Health and Human Services condemning the trial. The New England Journal of Medicine supported the study, however, finding the consent forms adequate, the publication accused the Office of Human Research Protections of giving clinical research a bad name. Leaders of the National Institute of Health also backed the trial.
Neonatologists face additional risks of using respiratory treatments on pre-term infants. When an infant needs more oxygen ventilation than it can handle, Pardalos said their lungs could rupture like balloons.
And yet some mothers, like A'Taliya's mother, Renee Williams, are willing to do anything to give their child a chance at life.
As African-American females, both Amillia and A’Taliya had an advantage. Although science has yet to explain why, African-American baby girls are among the more likely to survive. O'Connor said they appear to be slightly more mature, eat quicker and respond better to ventilators.
O'Connor treated an African-American baby girl born eight weeks premature who began feeding on her own a week later and never needed a ventilator.
"We love it when that happens," he said.
On the other hand, white male infants are among the least likely to survive. O'Connor said it's referred to as "wimpy white male syndrome." And yet, the youngest infant to come through the NICU at the Women's and Children's Hospital, which specializes in pre-term treatment, was a white baby boy born at 22 weeks. Less than 10 percent of infants born at that age survive, Pardalos said.
That rambunctious child, William John Beversdorf, came into the world kicking and screaming at just 1 pound 3 ounces. His mother, Shelley Beversdorf, refers to him as a "tough little thing" who emerged "half-cooked."
When he was born four years ago, his mother said William's eyes were still sealed shut, like a kitten's. His skin was extremely under-developed, so the medical staff warmed him with plastic wrap, a common practice in these cases.
He required oxygen treatment due to his underdeveloped lungs, but too much oxygen can cause blindness in newborns.
His chances of survival were extremely slim. With a brain that was so far under-developed, cerebral palsy seemed to be the likely outcome. He would probably spend his life in a wheelchair, Pardalos told his mother.
Pardalos, who handled the birth, prepared her for the worst before going into the first of three stomach surgeries to fix a perforated bowel. That dropped the baby's weight to 15 ounces.
The oxygen needed to keep him alive also caused the blood vessels in his eyes to overgrow. Fortunately, it was a controlled with a newly developed medication injected into the eye.
This disorder, called retinopathy of prematurity, affects 14,000 to 16,000 pre-term infants each year, according to the National Eye Institute. It is the leading cause of blindness in the U.S., and the disorder is the reason musician Stevie Wonder is blind.
Beversdorf spent 165 days in a chair beside the incubator, yet like A’Taliya’s mother, she did not consider any alternatives other than keeping her child alive.
"It was horrible … it was certainly worth it, but you just don't know," she said. "Every day is a new crisis and a new drama. He was on the (ventilator) for nine weeks, which is an extremely long amount of time."
Rewards can be great
In the end, the 4-year-old survived and today seems to be a normal, healthy boy. Although William looks to be about 2 1/2, his mother said he loves to run, play and pull silverware out of the drawers while she is on the phone. His vision seems fine, and he has no signs of cerebral palsy.
William's mom said he has also become a part of the Women's and Children's Hospital. He serves as a prime example of how far modern medicine has come.
When William and A'Taliya were released from the NICU, both children were expected to be two or three years behind other children their age, both mentally and physically.
William now participates in minor speech therapy sessions at his preschool. Like A'Taliya was at his age, he can be less socially engaged than some of his classmates. Otherwise, he isn't unlike any other kid who was born with fully formed skin.
His mother calls it miraculous.
A'Taliya's mother said her daughter may be a little skinny, but she has a big appetite and is of average height. The girl was about a year and a half old before she said her first word, and for a time her mother worried if they would ever have a conversation, but now shyness is her only limitation.
Both mothers know they are lucky that their children do not have disabilities and that others aren't as fortunate.
Renee Williams discovered just how lucky she is after joining a support group for mothers of premature newborns.
"It could have been worse," she said. "Some of the kids there were really disabled, and it was going to be a struggle for the rest of the parents to deal with."
The two mothers believe they would have cared for their kids either way, but they have certainly thought about what it would be like to care for a disabled child, as well as the pain both parents and patients go through. They don't fault the parents of extremely premature infants who decide to let their children go.
O'Connor said that about half of the parents of infants born at 22 weeks choose to forego resuscitation, choosing comfort care instead. The babies are wrapped in a blanket and made as comfortable as possible until they pass on.
Beversdorf said each infant should be treated individually, legally and ethically.
"I think that Dr. Pardalos, if he couldn't have done it or he didn't think it was feasible, he wouldn't have made the attempt.
"He just basically said, 'There's no reason to think that this baby is going to live, but we will try to get a tube down him,' and he came out and got the tube down him, and that was what happened."
Renee Williams said she knows what a challenge it would be if her daughter required 24-hour care, but she was willing to accept the risk.
"I don't think there are words to describe how I would have felt coming home empty handed," Williams said.
Supervising editor is Jeanne Abbott.