Story by: Rachel Ross
When Gina Fornecker arrived by medical helicopter at Vidant Medical Center in Greenville, N.C., doctors and nurses greeted her with a battery of questions and tests.
Fornecker was 23 weeks pregnant and her water had just broken dangerously early. Full-term pregnancies typically run 40 weeks. The viability cutoff line for babies is 23 to 24 weeks. Babies born before 23 weeks are expected to die.
If the baby was born that day, Fornecker and her husband, Sam Fornecker, had to decide whether to resuscitate him.
“I can’t even describe the way that felt,” Gina said. “It was the worst imaginable kind of answer to give. Do we fight or not?”
The medical staff faced dozens of decisions — literally life-and-death decisions – for both Fornecker and her unborn child. Preterm birth is the leading global cause of death for children under 5. Preterm babies can have a number of health issues with their fragile, undeveloped lungs, potential brain bleeds, eye conditions that could lead to blindness, and nutrition.
Thirty years ago, children born this early in a pregnancy would have likely faced a number of these problems, if they survived at all. Now, thanks to advances in prenatal and neonatal medical technology, a child born this early has a fighting chance not only to survive, but to thrive.
Prenatal Care
Fornecker, her husband and two children live in Cambridge, England. She went into labor while they visited her parents in Goldsboro, N.C. This only added to the complex situation they were in.
Her child was in a transverse, or sideways, position. While common for a fetus that young, babies at full term are usually delivered head down. The risk to the mother of a Cesarean section at that point in gestation is considered to outweigh the viability of the child.
Keith Nelson, Fornecker’s obstetrician at Vidant, wanted to delay her labor to give the fetus more time to develop and a higher chance of survival.
They put her on blood pressure medication to relax the muscles in her uterus and relax her contractions. But that added a complication. Fornecker exercises regularly and has a healthy blood pressure. The medicine caused her blood pressure to drop and she began to feel ill. They discontinued the medication.
“I was in labor, but I was also on this medication to stop my labor. So my body was like, ‘What is going on?’” Fornecker said.
She began taking magnesium to reduce the chance of cerebral palsy in the child. Nelson said it helped stabilize the membranes in the brain. Fornecker described the magnesium as “flu in a bottle,” adding to the sickness she felt.
Doctors also injected her with steroids, hoping they would hasten the child’s development in the womb, specifically his lungs.
According to Nelson, breathing is the first concern with an early baby. Getting strong oxygen flow “unlocks” progress in other areas for the baby. It reduces the risk of infection in the intestines, bleeding in the brain and eye conditions.
With the help of these medications, Fornecker was able to hold off labor for 10 days. Those 10 days increased the baby’s chance of survival to 70 percent, said Joe Ponzi, Fornecker’s father and a pediatrician.
They named the baby boy Alder.
Nelson described the extra days Fornecker had the baby in utero as “precious” because of the increased chances they gave Alder. He said that even hours she was able to hold off delivery were “invaluable, golden hours.”
But, whether they should resuscitate Alder was still in question leading up to his delivery. The Forneckers decided that they would not intervene if he did not look strong enough, and the neonatal team said it was the right thing to do. But they wanted to give him a “fighting chance,” Forncker said.
“If he’s bigger than a 23-weeker would be, I want you to do everything you can,” she told the doctors at Vidant.
If a baby does not respond, does not cry or attempt to make noises, the pain of resuscitation to the baby is considered cruel, as the attempts will likely be futile. They don’t breathe normally or have a normal heart rate, Nelson said.
When Alder was born, he did look “successful.” But there was still uncertainty, and Fornecker wasn’t able to properly see him before he was hurried to the neonatal intensive care unit (NICU).
“I didn’t know if he was going to live past the hour,” Fornecker said.
The Lungs
Breathing is the first thing the neonatal team addresses at the birth of a preemie because normal breathing is the “foundation stone” for preventing common health problems in preemies, Nelson said.
As soon as Alder was born, John Koehler, his neonatologist, put in a tube to help him begin breathing.
Alder was also administered artificial surfactant after being intubated to help his lungs breathe. Because Alder was born so early, he did not have the opportunity to develop surfactant before birth.
Surfactant is a naturally occuring substance in the lungs that helps them to initially fill with air. It’s discovery and the ability to produce it artificially is considered the greatest advancement in caring for premature babies, even more so than administering prenatal steroids.
Rob Ross Russell, a pediatrician at Addenbrooke’s Hospital in Cambridge, described surfactant as a substance that helps the lungs to expand. He likened the lungs to a balloon, noting that when a balloon is small and has never been blown up before, the initial breaths to blow it up will be “jolly hard work.” With surfactant, Alder and other babies have an easier time expanding their lungs.
“The chronic lung disease that we see is caused by us,” Ross Russell said. Bronchopulmonary dysplasia (BPD) is a common disease that babies who have spent time on breath-assisting machines develop. Most recover, but some have continued difficulty breathing from the scarring respirators can cause.
But doctors have no option other than to put preterm babies on respirators, if the babies are to live and learn to breathe on their own.
Babies should not spend much longer than a month at a time on oxygen support.
When Alder was about three weeks old, he was extubated for the first time. The Forneckers celebrated this feat by moving to Goldsboro from the Ronald McDonald House to be able to spend more time with their “big kids.”
Later that night, the doctors called to tell Fornecker that they reintubated Alder. He did not do well on the next step up from being intubated, receiving oxygen from a sort of mask.
This was a major step back for Alder, taking his blood gases dangerously low. From the tone of voice of the doctor’s call, Fornecker thought, “They really don’t think Alder is going to make it through the night.”
The Brain
According to Ponzi, with babies born at 24 and a half weeks, there’s a “significant chance of bad things happening.” Brain hemorrhages, or brain bleeds, are one of those things.
A delivery room is supposed to be around 77 degrees Fahrenheit. Nelson said that little things like turning the temperature up in the delivery room can reduce the risk of bleeding in the brain for newborn preemies.
CT scans are normally given to babies at about one month old to check for brain bleeds. But, in extreme cases, like Alder’s, they are performed for newborns.
At birth, Alder had a grade two out of four brain bleed. Being right in the middle of the scale made Alder’s future unclear. The bleed could either lead to learning difficulties or cause no problems at all.
Fornecker was never too concerned about Alder’s brain bleeds, though, because Koehler’s reaction to his newborn scan was “reassuring.”
Alder had a second scan to find out if the bleed was improving or worsening some days later.
“I think I was hungry for good news,” she said. “Which we received.”
The bleed was reducing. He was one of the lucky preemies who would not have learning difficulties stemming from a brain bleed.
“Alder’s mental health and stability was never as much of a concern to me as his eyes and his lungs,” Fornecker said, noting that Alder’s being on oxygen support for so long correlates with eye complications.
The eyes
The only major surgery that Alder had was eye surgery.
Shortly after Alder was born, a friend of the Forneckers visited them at Vidant. The friend’s husband was pediatric ophthalmologist, and she asked if Alder had been checked for a condition called retinopathy of prematurity (ROP).
Fornecker didn’t know what ROP was but said, “It had a dreadful ring to it.”
The condition can lead to blindness if it goes uncaught and continues to regress, according to Louise Allen, an ophthalmologist at Addenbrooke’s. Until October, Alder was still too young to even have his eyes tested. And not many ophthalmologists are willing to perform the laser surgery to stop ROP because one misstep could blind the patient. Fornecker worried about it for weeks.
Fortunately, one of the country’s leading pediatric ophthalmologists was less than two hours away at Duke University Hospital in Durham, N.C. In October, Alder was airlifted to Duke, where his ROP was confirmed and treated
The first treatment Alder received at Duke was an injection. It is not yet widely accepted because the side effects are unknown and potentially harmful to preemies’ blood vessel development.
The substance injected into Alder’s eye slowed the progression of ROP. But 20 percent of children see a recurrence of the condition after injection. So, Alder received two injections to stave off ROP until he was more developed and it was safe to do the more effective laser surgery.
Months after Alder’s injections, he had laser surgery at Duke to stop the progression of ROP. The downside to this treatment is the loss of peripheral vision. Alder now has to wear glasses.
Development
Alder had trouble feeding, stemming from his extended time on a respirator.
Being on a respirator, with air blown into his face and tubes being passed, was a “negative touch” experience for Alder, making feeding a “scary prospect”, said Laura Baird, a speech and language therapist at Addenbrooke’s Hospital.
Therapists like Baird educate parents how to initiate “positive touch” with their baby. Gina gave Alder massages, starting when he was about three months old.
But when preterm babies become more comfortable, thanks to therapy with positive touch experiences, their suck-swallow coordination may not be developed.
“They have that desire to just suck swallow suck swallow suck swallow until they run out of breath and start to desaturate,” Baird said.
This makes for an unsafe feed and feeding may seem even scarier for a baby.
By implementing baby-led actions like positive touch and feeding, babies can grow to be more comfortable with oral feeding or things near their face.
Alder began his oral feeding journey with steps as small as sucking drops of formula from a pacifier.
Outcome
From weighing one pound, seven ounces at birth, Alder has grown to be a healthy child. In November, the Forneckers celebrated his first adjusted birthday, meaning the day he was supposed to be born.
Gina said his progress sometimes felt like taking one step forward and then going a mile back.
But, with the help of medical advancements, and the fierce love of his mother and family, Alder beat the odds. He is a healthy 1-year-old, developing on track. His lungs expand and collapse as they should. He has no signs of cerebral palsy and is on track intellectually. He eats solid foods along with his formula. He may need glasses, but sees well. He’s learning to walk.
Alder is a success story and is a testament to how far medicine has come. When he has checkups in Cambridge, doctors are shocked that he was born at 24 and a half weeks, Gina said.
“We have this amazing baby that you would never know was born at 24 weeks,” Gina said
