Jeff Newberry passes around his iPhone to a table of colleagues, proudly showing off pictures of his new baby girl, Madison, “She’s doing really well. She’s only taking two antibiotics a day for the incisions on her back and head.”
He beams as the small crowd oohs and aahs over the pictures. This is a much different man than had been walking around campus just a week ago, stressed and worrying about his small family almost 200 miles away. Then, his wife and new child had been waiting to come home from Scottish Rite Hospital in Atlanta, where they spent the last three weeks.
Jeff, referred to as Dr. Newberry by students, is a tenured English professor at ABAC known for his poetry but also his large stature and commanding presence. Very involved at the college and well liked by his colleagues and students, his family life had been the talk of the college for many months, with constant concern for his new baby’s well being.
Jeff tells his friends that his wife and baby are coping well now that they have made it home. His voice booms throughout the restaurant. Everyone listens intently to his new baby stories as he sips on a cold beer, obviously pleased that so many people care. The conversation sometimes turns toward a different subject, but it is clear that Newberry’s family life is the main topic of conversation.
The next day at home, Jeff lounges in his recliner, barefoot with his shirt un-tucked, having just returned from work. His wife, Heather, comes out of the closed bedroom door with the small baby. Little Madi takes in all of the sights around her. The small living room is much different than the hospital room she had become accustomed to in the last three weeks.
As Heather sits down on the couch, she holds Madi close. It does not appear that the two had been separated for three days before truly meeting, nor does it appear that the couple’s seven-year-old son had just met his baby sister four days ago. Ben, a precocious and welcoming boy, sits down on the couch beside his mother and watches the baby’s every movement. Soon he asks if he can hold her, and Heather passes him gently to the baby bobby in Ben’s lap, a large circular pillow that cradles the baby upright. Ben gently holds the baby in his arms, being careful to move as slowly and gracefully as possible.
Heather discovered she was pregnant at a conference in North Carolina. “I just had that feeling,” she says. She stopped at a Target to get a pregnancy test. Her intuition was correct.
Ben interrupts. “Remember to tell her that she has a shunt,” he tells his mother, showing just how aware he is of the situation around him.
“I know. I’ll get there soon,” she assures him as she takes the fussy baby back into her arms. Ben is hanging on every word his mother says, making sure that she doesn’t leave out any detail.
“I was excited…surprised…confused,” Ben said about learning the big news.
“He also told us that he wouldn’t be able to keep it a secret, so we had to go ahead and tell everyone,” Heather said.
Then, a few months into the pregnancy, a blood test showed positive for signs of spina bifida. Heather called Jeff, who was away working on his latest book. He immediately went on Google to figure out exactly what this meant.
Spina bifida is a birth defect that affects eight babies born everyday in the United States, and literally means “split spine.” It occurs it the womb when the spinal column does not develop completely. The condition can lead to a number of birth defects, ranging from mental and social issues to physical limitations. The Newberrys were terrified.
They made an appointment in Albany for the next week to meet with a neonatal ultrasound specialist.
The nurse at the doctor’s office was friendly, making small talk about her hometown in Florida. Mid ultrasound, she got quiet.
The doctor came in a few minutes later. He was retired, filling in for an M.D. who was on vacation. He was very straightforward.
He told the Newberrys that their baby would probably be paralyzed, with no hope for getting better. He warned them, “She won’t have a high quality of life. Most people would choose to terminate the pregnancy in this situation.”
This was not an option for Heather and Jeff, who are very strong in their faith. They were determined to get through this pregnancy, no matter the circumstances.
“This is something we couldn’t fix,” was going through his head over and over. The feeling was surreal. How could this be happening to his happy little family?
Jeff got himself together enough to go get Heather from the room, and they left in silence. The drive home was a mix of anger and tears, both trying to console the other as they, themselves, could barely keep it together.
The ensuing weeks were awful. Heather and Jeff did nothing but research the disease, finding all of the worst possible scenarios.
They were referred to another doctor. Weeks passed before they could get in to see the specialist in Atlanta, one of the top neurosurgeons in the state. Dr. Andrew Reinser, an older man with ample experience in the field, greeted the Newberrys warmly, congratulating them on their pregnancy. He also applauded them on how informed they were about all of the possibilities the diagnosis could bring, and commended them on their bravery to go through with this pregnancy, something many choose not to do. Reisner told them that only 60 percent of babies diagnosed with spina bifida are born, because most parents unable to deal with the diagnosis.
As Heather had the ultrasound, Reisner told them that their case was nothing that he had not seen before. He knew how to handle a baby with the problems like those of their child. He explained that everyone had a different experience with the diagnosis; no two cases were the same. They toured the neonatal unit where Heather would give birth and Madison would be brought into the world.
His exact words regarding Madi’s leg function were, “Well, I wouldn’t go
out and buy a wheelchair just yet.”
The doctor left them, saying: “I’m happy that you’re so informed, but stay off of Google. No one else can tell you how this experience will be for you. Each case is personal.”
This visit changed the Newberry’s entire outlook on the pregnancy. From then on, they were, as they liked to say, “cautiously optimistic.”
The baby grew quickly. The ultrasounds showed lots of hair and strong cheekbones. Heather could feel her kicking constantly, demonstrating the strength in her legs. Their Madison was soon ready to be born.
Going into the birth was nerve-racking. Jeff kept telling people, “The hell of the whole thing is not knowing what’s going to happen.”
October 9 came quickly. This was the day of Heather’s scheduled C-section. The doctors did not want Madi to face any more trauma than she would already have to, so they decided the best option was to schedule the birth.
What was supposed to be one of the best days of Jeff and Heather’s life proved to be one of the hardest. Heather went into the C-section, leaving Jeff and her parents waiting.
Soon, the doctor and came and gave Jeff the news: “Heather is losing blood quickly. We’ve sent Madison to the NICU already, but we have had to give Heather four units of blood. A vein was cut between her uterus and bladder, and she is in critical condition.”
Jeff panicked. The two most important women in his life were both fighting for theirs. Madison had gone into surgery to fix her spine and the nerves surrounding it. Heather’s future was unclear.
Jeff decided to wait at the hospital for Heather. He felt that the doctors were taking care of Madi, and Heather needed him the most.
Soon, Heather recovered, but was weak and unable to leave her hospital room.
Jeff was able to see Madi after her surgery the next day. Dr. Reisner said her surgery went spectacular, telling Jeff, “On a scale of one to 10 with 10 being the highest, your daughter is a 20.” Jeff said he thinks that was the best news he’d ever heard.
Madi was healthy, but not reacting very well to the morphine they were giving her for pain. Later that night, after things had finally calmed down from the hectic day, Madi went apneic. She had stopped breathing.
There was panic at the hospital. The nurse put the baby on a ventilator and feeding tube. She was unable to function for herself, a sickening feeling for Jeff and Heather, who had not been able to see her baby since she was first born.
Madison took days to recover. But soon, she was growing stronger, fighting and fidgeting as the nurses tried to change the bandages on her back. She always seemed hungry, and her bladder was working properly, one of the Newberrys’ biggest concerns before the birth.
Three days after the birth, Heather first got to spend time with her new baby girl. Before that, Jeff had been splitting his time between two hospitals, Scottish Rite, the Children’s Hospital of Atlanta, and Northside, where Heather had delivered.
Three weeks after the birth, the Newberrys were able to take Madi home. At this point, Ben had not yet met his baby sister. The Newberry’s church decorated their home in anticipation of the arrival.
Four days after she returned home, the Newberrys are still trying to get into a normal routine. Madi is sleeping and eating well. The only sign of her diagnosis is the long, raised bump showing on her tiny head, an indicator of the shunt she had placed two days before she came home. The Newberrys are still nervous about the future, but hopeful. Ben insists on kissing Madi and telling her goodnight and goodbye every morning and evening. Jeff is back at work. Heather is still staying at home watching Madi closely.
The future consists of doctor’s appointments every three months and some uncertainty. As of now, Jeff, Heather and Ben are focused on learning their new baby’s personality, quirks and different traits. After a hectic last year, the Newberrys are looking forward to getting back to their regular, quiet routine and enjoying being a family of four.
Jeff Newberry would like to give thanks to the Tifton and ABAC community who supported his family throughout the entirety of the pregnancy. He gives a special thanks to Dr. Erin Campbell, Dr. Joseph Brown, Dr. Mark Erroll, Dr. Jordan Cofer, Dr. Wendy Harrison, and Dr. Bobbie Robinson, who worked hard to cover his classes. He says, “They went out of their way to be kind and to provide support. Dr. Robinson, my dean, encouraged me to take off as much time as I needed. I felt very loved by the ABAC community.”
He would also like a give a huge thank you to his close friend, Dr. Joseph Brown, who arranged for a place for the family to stay in Atlanta after Heather was discharged but Madi was still in the hospital.
The Tifton Community also played a huge part in helping the Newberry Family in this trying time. La Berry hosted an event called “Lemonade for Madi,” a kind of silent auction for items donated by local businesses. The money they raised helped pay for the family’s trip to Atlanta, and will continue to help pay for future travels. This was the brainchild of Heather Denham, a woman who attends their church, New Life Presbyterian.