Today, a mother and father in New York will celebrate their daughter’s three months of survival after she was born 15 weeks early.
Later this month, another couple in a neighboring town will celebrate their son’s birthday, 18 years after he was born weighing less than two pounds.
Although the traumatic births were 18 years apart, both couples are examples of how modern medicine is providing premature infants with more of a fighting chance.
In fact, extremely preterm infants born today are more likely than ever not only to survive but also to have far fewer major complications, such as chronic lung disease or potentially life-threatening infections.
These findings are part of a two-decade study released by Emory University and published in September in The Journal of the American Medical Association.
This good news is the result of advances in medicine over the past two decades that have changed care for mothers in preterm labor and for extremely preterm infants, according to Dr. Barbara J. Stoll, who led the study while she was at the Emory University School of Medicine in Atlanta.
Stoll and her colleagues reviewed trends in maternal/neonatal care, complications, and mortality among 34,636 infants. All babies were at 22 to 28 weeks' gestation with birth weights of 14.1 ounces to 3.3 pounds and born at 26 Neonatal Research Network centers between 1993 and 2012.
“This 20-year review of care practices, morbidity, and mortality of extremely preterm infants leads us to be cautiously optimistic,” Stoll said in an interview with Healthline. “Our findings demonstrate that progress is being made and outcomes of the most immature preterm infants are improving.”
The study demonstrated a significant increase in survival to hospital discharge for infants 23-25 and 27 weeks of gestational age. The largest gains were for the most immature infants born at 23 and 24 weeks.
“Perhaps the most important and most optimistic finding is a significant increase in survival to hospital discharge without major in-hospital neonatal morbidities,” Stoll said.
For example, for infants born at 28 weeks who were discharged, survival without major complications increased from 43 percent to 59 percent over the study period, she said.
“These feared complications of prematurity,” she said, included infection, chronic lung disease, bleeding inside the skull, tissue death in the lining of the intestines, death of small areas of brain tissue, and severe retinopathy (a potentially blinding eye disorder).
Two people who know more than most about extreme “preemies,” major complications and long-term outcomes are Laura Sullivan Leitman and her husband, Jorge Leitman.
Their son, Alec, was born almost two decades ago at Winthrop University Hospital in Mineola, Long Island, N.Y., at 25 weeks and weighed 1 pound, 13 ounces. He lived in the neonatal intensive care unit (NICU) for more than three months.
As a young boy, Alec experienced brain bleeds, weight loss, failing vision, intense allergies, severe reflux and heartburn, neurological difficulties, asthma, and a highly compromised immune system. He also reached developmental milestones slowly.
Today, however, at almost 18, he is a bright, healthy, athletic high school senior, preparing for the SAT and looking at colleges.
In another New York town, Craig and Stephanie Yanantuono are in the first few months of their daughter Anna’s still-fragile life. Like Alec, Anna was born in Winthrop University Hospital at 25 weeks, on July 14. So far, the NICU has been her only home.
Stephanie had no signs she would deliver early.
“We had an appointment for a 25-week sonogram, on the evening of July 13,” she told Healthline. “Six hours later, at midnight on July 14, Anna was born.”
She weighed 15 ounces. Anna was so tiny and fragile that it was weeks before her parents could hold her.
“I held Anna for the first time on August 10, when she was 27 days old,” Stephanie said. “Craig held her for the first time five days later.”
By September 13, Anna had reached 2.2 pounds, and by October 1 she weighed 3.3 pounds.
Anna has been given supplemental oxygen with a thin tube or cannula. Now she receives only 21 percent oxygen.
“This is the amount you and I breathe in the air,” Stephanie said. “So, essentially she is breathing on her own now. They will cycle her off the oxygen when they are sure she can breathe 100 percent on her own.”
While Stephanie had no early-delivery warning, her obstetrician knew at nine weeks that Anna had a “vanishing twin.”
That meant that her placenta was small and located on the front of the uterus. In addition, part of the placenta had died in some areas and caused reduced blood flow.
On July 13, the sonogram technician working with Stephanie noticed some irregularities. She called for the obstetrician, who continued the sonogram.
“At that point,” Stephanie said, “we both knew there was a problem without anything having to be said. He told us that she was measuring at 21 weeks – this was week 25 – and that the amniotic fluid was very low.”
The doctor asked Stephanie to go to Winthrop right away, to monitor the baby for 24 hours and to observe her.
Stephanie and Craig’s reaction?
“We were scared, upset, and disappointed,” Craig said. “We were advised about all of the extremes before we left the doctor’s office, the worst of which was that Anna would not survive.”
When the Yanantuonos arrived at Winthrop, the hospital’s on-call high-risk obstetricians calmed them.
“They gave us the feeling it wasn’t as bad as it appeared,” Stephanie said. “In terms of Anna’s development, we were worried every day about it. However, there was a point along the way, and I don't remember when, that we just felt calm. There wasn't really a reason to worry so much. We knew she was doing well, and it was just a matter of time for her to get bigger and stronger.”
Anna’s parents are grateful for all the care their daughter has received.
“A miracle,” Stephanie said. “When you hear medical professionals using terms like that, it’s really humbling – to know that even those with scientific backgrounds still have a belief in something that is far greater. They tell us she is doing well. She just needs more time to develop, gain weight, and become stronger.”
What developmental challenges does Anna still face?
“They say that any preemie can be a little behind in developing motor skills such as crawling,” Stephanie said. “In Anna's case, being a micro-preemie, it can be even truer. Only time will tell. We feel as though she is developing extremely well. She has been very active and mobile, even lifting and moving her head, for a long time now.”
Dr. Nazeeh Hanna, the chief of neonatology at Winthrop and professor of pediatrics at the State University of New York at Stony Brook, has overseen Anna’s care.
“Our survival rate for very low birth-weight infants is always above the national average, which is around 85 percent,” Hanna said. “This year so far, we’ve had 54 babies born at this extreme prematurity, and so far we’ve lost not a single baby. Our survival rate is 100 percent.”
Stoll and her Emory colleagues concluded from their study that key factors in the greatly improved survival rates for extremely premature infants were the use of corticosteroids and less aggressive lung ventilation.
“The use of antenatal corticosteroids, which is recommended for improved neonatal outcomes, increased from 24 percent to 87 percent between 1993 and 2012, as did cesarean delivery, from 44 to 64 percent,” Stoll said.
Hospitals have been less aggressive in intubating babies, a strategy that has reduced lung injuries from 80 percent to 65 percent over the 20 years of the study, she added.
Less invasive strategies include “gentle ventilation” from the moment of birth, avoidance of endotracheal intubation in the delivery room immediately after birth, increased use of surfactant (a naturally produced fatty liquid that acts like grease within the lungs to keep air sacs open), and increased use of early continuous positive airway pressure, in which mild air pressure keeps airways open.
Another critical danger to extreme preemies is sepsis, or bacterial blood infection. While the study showed no improvement between 1993 and 2004, the rates of late-onset sepsis dropped between 2005 and 2012 for infants of each gestational age.
In addition, while rates of other complications declined, those for bronchopulmonary dysplasia (a chronic lung disease developed after oxygen inhalation therapy or mechanical ventilation) rose between 2009 and 2012 for infants at 26 to 27 weeks’ gestation.
“Although survival of extremely preterm infants has increased over the past two decades, including survival without major morbidity, the individual and societal burden of preterm birth remains substantial, with approximately 450,000 neonates born prematurely in the United States each year,” Stoll and her colleagues wrote. “To truly affect newborn outcomes, a comprehensive and sustained effort to reduce the high rates of preterm birth is necessary.”
“Although our study did not report long-term outcomes after hospital discharge,” Stoll said, “we are hopeful that the increase in survival without major morbidity will translate into improved long-term outcomes.”
These statistics are heartening to parents, but they tell only the facts, not the intimate, emotional journey that each family must make.
Laura Sullivan Leitman kept a record of her family’s medical adventure. In 2014, using details from nearly two decades of diaries and notes, Leitman wrote and self-published Preemie Peace.
She told Healthline she hopes the book, based on their experience with Alec’s birth and difficult young life, will help others.
Proceeds from book sales finance the work of the Leitman Neonatal Research Foundation, which she established with her husband.
In 1994, Leitman delivered her daughter Natalie after an “uneventful” pregnancy. Three years later, she was 24 weeks pregnant with Alec. On October 19, 1997, while on a pumpkin-picking trip to a farm with Jorge and Natalie, her water broke.
The Leitmans rushed to Winthrop University Hospital, where they met her obstetrician, Dr. John Biordi. She lost more fluid.
“Not only had my water broken,” she said, “it had broken because of a rupture to my amniotic sac. I was standing in all the escaped fluid meant to house Alec.”
“In the maternity wing, I was helped into a hospital gown and placed upside down at a 45-degree angle,” she said. “Ideally, Dr. Biordi wanted me to hold the pregnancy in. He wanted me to carry for 16 weeks like that. I prepared myself mentally for a long-term stay.”
In a meeting with Biordi, the Leitmans learned what had to be done.
“If we were to save this baby,” she said, “we’d have to allow them to administer a steroid to me so the baby would receive it, which would force his lungs to open, in case he was born that week. It would offer Alec a fighting chance to actually take his first breath with immature lungs and be given an opportunity for survival.”
She chose the steroid. Biordi also wanted to administer a steady dose of magnesium sulfate, known as “The Mag.” The liquid, delivered through an intravenous line, slows uterine contractions.
“Dr. Biordi said it would burn like hell as it ran through my veins,” she said. “But it would save our son’s life.”
She chose The Mag. After a torturous six days, Alec Sullivan Leitman was born on October 25.
“Jorge came in to tell me our son was alive,” she said, “and that Alec was purple and so tiny that he fit into Jorge’s hand, from the tip of his cranium to his tailbone.”
After nearly three and a half months in the NICU, Alec was “happily, full-term,” and his parents took him home.
As Laura wrote in her book, “Alec’s milestones are exactly what I was told they would be by his amazing doctors and nurses in the Winthrop NICU. His movements and growth would come, but the passages would be so slow that there would appear to be no growth. Alec stands before me, at this writing, as a young man who is 160 pounds and 6 feet tall. He just passed his second math regents exam.”
Alec’s typical week includes practicing the piano and saxophone, playing soccer, going to swim-team practice, riding his bike, and reading.
“When he is 20, no one is going to ask me, at what age did he walk, at what age did he speak,” she wrote. “At the age of 20, you can bet the playing field will be level … surely by the age of 20 the ‘fair shake’ that my son deserved and deserves will be our reality.”
Beyond the improved outcomes revealed by Stoll’s study at Emory are the inspiring stories of these two families and of many others.
The story of the Yanantuonos, whose tiny daughter Anna makes progress every day in the NICU, is one of hope. The story of the Leitmans, whose son Alec is thriving after a long journey of harsh challenges, is one of gratitude.
Today, on October 14, Stephanie and Craig will go to the NICU to celebrate what they call their daughter’s three-month “Anna-versary.”
On October 25, Laura, Jorge, and Natalie Leitman will gather around a cake and watch Alec blow out 18 candles.
The photographs on this story are courtesy of Craig and Stephanie Yanantuono,