Extremely premature baby celebrates first birthday thanks to modern medicine
Posted December 11, 2018 12:02 p.m. EST
Greenville, N.C. — Doctors told Gina Fornecker not to listen to the heartbeat of her unborn baby.
“You’re just going to have to listen to him die.”
She cried angry tears at the doctors’ lack of hope for her baby as she lay in a hospital bed at Vidant Medical Center in Greenville, North Carolina.
Her husband, Sam Fornecker, was by her side, praying. Her father, Joe Ponzi, who is a pediatrician, was calculating the baby’s odds of survival in his head, trying to appear hopeful.
Earlier that day, Aug.1, 2017, Gina, Sam and their two children were running errands. Gina was 23 weeks pregnant.
Her water broke in the middle of a JOANN fabric store in Goldsboro. Their oldest child, Brooks, 4, began to giggle saying, “Mommy had an accident.” They rushed to Wayne Memorial Hospital, and Gina was soon airlifted by helicopter to Vidant.
The doctors told them that at 23 weeks gestation, there was only a 50 percent chance the baby would survive. They needed to slow Gina’s labor to give the child -- they had already named him Alder -- more time in the womb. The Forneckers had to decide whether to resuscitate Alder in the event that he was born and he did try to breathe or cry. And resuscitation is very painful for the child.
“If my baby is only alive for another 24 hours, I want to hear every second,” Gina said.
And thus began a medical roller-coaster ride focused on keeping an extremely premature baby alive. Along the way, the Forneckers had to manage a year-long, labyrinthian journey through two countries’ health care systems, stress over mounting financial debt, and separation from home and work.
Meet the Forneckers
The Forneckers live in Cambridge, England, where Sam is studying for his Ph.D. in church history. They were visiting family in Goldsboro where they grew up when Gina's water broke.
The two met at a church event in high school, but their relationship grew when they were at UNC-Greensboro. Gina studied dance, hoping to join a ballet company. They moved to Winston-Salem so that Sam could work at a church there. Gina struggled to find her place, and she watched her dreams of dancing professionally slip away.
She bought a fabric store in Winston-Salem where she held sewing classes. It allowed her creative side to flourish once more. She adored choosing which fabrics to sell: the textures, the patterns, the colors. Each fabric she carefully selected to fit her whimsical, but elegant style.
When the family moved to Cambridge in 2015, she sold the store, they sold their house, and they saved the money to live off of while Sam worked on his thesis.
They did not know that they might have to use that money to save their unborn -- uncontemplated, actually -- child.
The unexpected happened
On July 31, 2017, the day before Gina went into labor, she and her parents ambled around Goldsboro with their two children.
They went to the park and played, running around. Brooks’ blonde curls whipped back as he ran through the grass. Evelyn Rose, 2, twirled around in a dress made by her mother. When they got home, Gina felt tired, but she told herself that was normal with pregnancy.
At bedtime, she breastfed Evelyn Rose. She didn't think her daughter was getting much milk anymore, but she breastfed her every night for the comfort and for the skin-to-skin contact that bonds mothers and their children.
That night, the strong-willed Evelyn Rose fell asleep in Gina’s arms, something she hadn’t done in eight months. Gina said she normally rushes through bedtime, but that night something in her “caught.”
“There was just something so sacred, almost, about that moment and just seeing her asleep,” Gina said. She held her daughter and watched her eyelids flutter over her big brown eyes.
That was the last time Gina breastfed any of her children.
At some point in the night, Gina got up to use the bathroom and bumped her stomach on the open shower door. She felt a sharp pain.
Two hours later, she started having contractions but told herself not to worry. She had been having Braxton Hicks throughout the pregnancy and convinced herself these were no different. But they were more intense and did not stop.
As soon as she arrived at Vidant, doctors put Gina on medications to slow her labor and to help the baby to develop more quickly. But the blood pressure medication that was intended to relax her contractions dropped Gina’s blood pressure dangerously low, making her feel “half alive.”
On her medications, Gina was in no state to think about the financial crisis they could be in. Sam was a student and Gina was a stay-at-home mom. They had no income; the airlift in the helicopter cost nearly $15,000 by itself.
Because the Forneckers are technically residents of North Carolina, they qualified to apply for Medicaid. During the application process, they did not know if their bills would be covered. But Ponzi told Gina not to worry.
“I didn’t care if it cost everything I saved,” Ponzi said. “If I had to take care of it over 20 years, I’d do it.”
“That was amazing,” Gina said of her dad’s support. “But all of those people who don’t have that...not only are you dealing with a crisis, you’re dealing with a potential financial crisis, as well. That’s really heartbreaking.”
The family eventually was approved for Medicaid and never saw another bill. Ponzi said the bills tallied to nearly $1 million.
Gina soon stopped taking the blood pressure medication because it made her so sick. But it helped her to delay labor 10 days.
Those 10 days were crucial for the baby. They nearly doubled his chances of survival, Dr. Keith Nelson, Gina’s obstetrician, said.
Gina received a phone call from a friend shortly after arriving at Vidant. The friend recited a Bible verse for Gina that felt like a message sent straight from God.
The verse read, “I will contend with those who will contend with you and I will save your children.”
From that point on, Gina almost never doubted that her baby would be OK. The words, spoken from hundreds of miles away, made Gina feel God right next to her.
“It [felt] really strange,” Fornecker said, explaining that she normally doesn’t hear God that clearly. “From the start, I had that faith that he was going to come home.”
Doctors performed a Cesarean section on Aug. 11.
In the delivery room, everyone held their breath, waiting for the baby to cry and show signs that resuscitation would be worth the pain. The doctors held Sam back as they worked to get Alder breathing.
Gina asked the doctors to wheel Alder’s incubator past her bed on their way to the neonatal intensive care unit (NICU) so that she could catch a glimpse of him.
“I was able to see the tiny bit of his head that was showing through the bag and under all the hats,” Gina said. In the delivery room, Alder made attempts to cry and make noises. This was a good sign, but things could always go wrong. Gina sat in bed, weeping for the uncertainty of her baby’s life.
After delivery, Gina was moved to a recovery room that had two beds separated by a curtain. She was alone, crying inconsolably.
Kelly Weaver, a marriage and family therapist at Vidant who had been seeing the Forneckers, knew that Gina would want to help Alder, and the only way she could do that was to provide breastmilk for him. Weaver brought her a breast pump.
Gina was heartbroken because she realized that she would not be able to breastfeed Alder. But she agreed to do it.
“You really feel like you’re just a cow,” Gina said. It was emotionally traumatic because she knew what it should’ve been.
A mother with a healthy baby was put in the second bed. Through the curtain, Gina could hear the sounds of nurses teaching the mother how to breastfeed and all of the little sucking sounds her baby was making.
“I had to fight every impulse not to throw [the pump] across the room and tell everybody to get out,” Gina said. “It was really hard to hear that baby on the other side of the curtain.”
She ached to be with Alder, but wasn’t able to see him for another four hours.
While Gina was in the recovery room, Sam was looking after Alder in intensive care. Alder’s incubator was filled with ultraviolet lights to prevent jaundice, and he wore glasses that Sam described as “Schwarzenegger-style” to protect his eyes from the light. “He looked like something out of a sci-fi movie,” Sam said.
It was 17 days before Gina was able to hold Alder.
Even then, she could only hold the “cocoon” that he was in. His skin was so fragile that he has scars, to this day, from his diapers. Gina had to wait until his skin matured more to hold him skin-to-skin.
She found that she was able to do little things like stroke his head or hold his hand to create the skin-to-skin bond initially. Before he was ready to be held, it had to be enough just to be near him, to sing to him and to read to him.
Every day Gina remembered God’s promise.
“I really felt like the Lord had said, ‘You’re going to reap the the rewards, you’re going to reap the spoils. He’s not just going to come out of the NICU, he’s going to thrive,’” Gina felt the Lord’s message, each day from the very first.
At birth, Alder’s neonatologist put a tube from his nose into his lungs to help him breathe. The tube led to a respirator that would administer breaths. It is dangerous for babies to have mechanically assisted breathing for too long because it can cause damage to their fragile lungs.
When Alder was three weeks old, doctors felt he was stable enough to be extubated and off of oxygen via tube for the first time. This was a major milestone. Joy swept through the family, care unit and across the world when Gina posted about it on Facebook.
That day, the Forneckers decided to move in with Gina’s parents and out of the Ronald McDonald House. They felt Alder was stable enough not to need them on standby and they missed their “big kids.”
At 9:30 that night, Gina received a call from one of Alder’s doctors. He told her that they had to re-intubate Alder because his blood gases “tanked.”
Based on the tone of the doctor’s voice, Gina gathered that he didn’t believe Alder would survive through the night. It was the one time where Gina doubted what the Lord told her from the start.
“I felt I had been all in my head and he wasn’t going to make it,” Gina recalled of the moment when her faith in God’s promise faltered.
But Gina was always comforted, knowing that around the clock, someone was always praying for Alder. Before bed, each night, Gina and Sam would take time to pray for their baby and family. They would wake up to texts from friends in Cambridge, saying that they had just prayed.
“To know that someone was praying when I was asleep...it just meant so much,” Gina said. “The church was globally united in Alder’s journey.”
Alder leaves the hospital
Two weeks after his original due date, four months after he was born, Alder was discharged from Vidant. Gina and Sam left the NICU, triumphantly holding their now plump baby, free of wires and tubes. Doctors and nurses who walked the journey with them went to bid them goodbye.
“By the time their journey in our hospital had ended and they had gone home, not a person here was unaware of how things were going and what had happened,” Nelson said.
After putting off his Ph.D. for months, Gina and Sam decided that Sam needed to go back to Cambridge to catch up on his work and try to finish his thesis. Even if the family didn’t return to England, they felt Sam should finish his Ph.D.
When Sam left, Gina felt the most serious depression of her entire journey with Alder. He had been discharged in December, but readmitted with a small cold. So the family was only able to spend a week and a half, all under the same roof, before Sam had to leave.
Gina struggled to adjust to having one fewer caretaker. She would go to Alder’s appointments alone.
In October, Alder had treatments for a condition in his eye that could lead to blindness. The treatments were meant to stave off the condition until he was developed enough to undergo surgery. By the time he was ready, Sam had returned to England. Not many ophthalmologists are willing to perform the laser surgery Alder received because one misstep could blind the patient.
While Alder’s eyes were operated on, Gina sat in the waiting room, praying. She longed for Sam to be with her, to hold her hand and remind her of God’s plan.
“I was terrified for Alder’s safety and long term ramifications of what [the eye condition] could mean for him and for our family,” Gina said.
Gina also had to learn to take care of Alder and all of his equipment. She fed him with a gastrostomy tube that passed through his abdomen and into his stomach.
“Feeding him was a literal nightmare,” Gina said. Alder would “wail” the entire time she fed him and she had to do it every three hours.
She spent following months doing her best to keep Alder on track, so that he would be strong enough for a transatlantic flight. They had decided to move home.
On a sunny day in March, the Forneckers stepped through the front door to their quaint village home outside of Cambridge. The children ran around the house, excited by the sight of toys they had missed. Gina and Sam lit a fire to warm the house and Alder.
They were home.
Thirty minutes after they arrived, their friend Fiona Fletcher knocked on the door.
“It was amazing to see [Gina] was actually here, in the flesh, after all these phone calls,” Fletcher said.
The two embraced, sobbing into each other’s shoulders after eight months of separation and uncertainty of whether they would see one another again.
They all sat around the fire, taking turns holding Alder. The Forneckers were back where they belonged.
Not over yet
The months that followed did not look like the happy ending one would expect.
Five weeks after their return, Alder caught a case of bronchiolitis putting him in the intensive care unit at Addenbrooke’s Hospital in Cambridge for about six weeks. The Forneckers had to adjust to differences in care, like a lack of air conditioning. But they never worried about money, thanks to the National Health Service.
Since then, Alder’s health has been stable. He is able to eat solid foods and is even in the process of learning to walk.
Alder slept through his friends and family singing Happy Birthday at his first birthday party, exhausted from being the star of the show.
Adults meandered, tea in hand, through the crowd of church friends, neighbors and any others who closely followed Alder’s journey. Children ran around with sparklers. Everyone brought a baked good to share and everyone stuffed themselves with sugary treats.
Sam got up to speak, thanking everyone for their thoughts and prayers during Alder’s lowest lows and highest highs. He prayed an ancient prayer that once was recited at the birth of babies.
“What a joy it is to be a mom,” Gina said as she finished telling her baby boy’s tale. “I don’t take it for granted now. When we are all together, I know how special that is now and I don’t want it to be wasted time.”
When he woke up, Alder smiled at all the faces who’d gone to wish him well. He ate cake, he crawled around, he did everything a healthy 1-year-old would do.