Imagine going to the hospital to give birth to your first child, so full of hope and elation, and being completely unaware of anything abnormal with your seemingly healthy baby. Now imagine finding out when she’s only six days old that your beautiful baby girl was born with a genetic disorder that would decrease her life expectancy to only 18 years of age.
In 1995 Jolene and Corey Rogers were young, first-time parents who had no idea what exactly it meant when the doctor told them their newborn, Paige, had meconium ileus, or why she needed surgery. They later learned it is a bowel obstruction that occurs when the meconium in the child’s intestine is thicker and stickier than normal meconium and creates a blockage in the part of the small intestine called the ileum. It requires surgery to remediate the issue. Even worse, meconium ileus is also an indicator of cystic fibrosis. No sooner did Paige enter the world than she was diagnosed with cystic fibrosis and undergoing her first of what would turn out to be countless surgeries.
“We didn’t even know what cystic fibrosis was,” Jolene said. “They explained it to us and I said, ‘What does that mean?’” The doctor’s response? “It means she’s going to spend most of her life in and out of the hospital.’” “It was very devastating,” she said. “I was only 21 and it was our first child. It was terrifying…it was a hard thing to deal with.”
In a matter of moments the Rogers’ lives had shifted in ways they could not fully even comprehend. The first month of their daughter’s life was spent in the hospital. When Paige was finally released, she went home and immediately began taking medications and doing breathing treatments. In addition, her parents had to learn how to do CPT (Chest Physiotherapy) on her to help clear her airways and remove the thick, sticky secretions that made it difficult to breathe.
Her first serious illness, Jolene said, came when Paige was two years old. She was hospitalized in Carlsbad with pneumonia for two weeks, but because she was not getting better, they transferred her to Albuquerque, where she spent several more weeks. Further complicating matters, she also contracted a staph infection while in the hospital.
During this time, Paige was diagnosed with pseudomonas, a type of bacteria that is found in a lot of different plants, dirt, and water. While it does not make most people sick, in a person with CF, the bacteria can embed in the mucus and create a sort of matrix, or biofilm, that keeps the patient infected for months or even years.
In the years since her initial diagnosis and first serious illness, medical treatments have advanced, Paige has continued her battle against CF, and Jolene and Corey have never wavered in their support of and care for their daughter. Paige has already surpassed the odds stacked against her from birth, having lived now to the age of 23.
A Mother’s Love
There’s something about a mother’s love that makes it nearly unbearable to witness her child suffering. It’s also in the DNA of most mothers to immediately go into “help, nurture, protect” mode when it comes to the wellbeing of her child. In 1995 when Jolene brought home her newborn baby that had been diagnosed with CF, her motherly instincts kicked in and she not only provided medical care for Paige, but she worked equally as hard at protecting her. “I didn’t get her out and take her places because I didn’t want her to get any germs,” she admitted. “I didn’t take her to the grocery store, never took her anywhere like that where she would be around a lot of people with germs…a simple cold could be very dangerous for her so I limited who and what she was around.” Paige was two years old before she ever went anywhere with her mother outside of the family home and doctors’ offices.
As Paige grew up, however, Jolene knew it was important for her to live as normal a life as possible, which meant having friends and attending school. It was not an easy decision, Jolene says, but it was necessary in order to keep her from having to “live in a little bubble.” “My grandmother was an elementary school teacher so she had a little fold-out bed in her classroom,” Paige recalled. “So on days that I felt bad or wasn’t able to sit in the classroom because I needed to nap, I could go to her classroom and nap.” Looking back, Paige says that since she is an only child, she’s grateful that her mom allowed her to attend school and make friends because it allowed for some sense of normalcy.
Perhaps it’s a side effect of that deep, unconditional love of a mother that she would sacrifice so much of herself for her child. Jolene knew that because she and her husband were both carriers of the CF gene, there was about a 25 percent chance of having another child with CF, but she also knew that having another child would mean less time to care for Paige. Caring for Paige became her number one priority. She has spent the last 23 years of her life making sure her daughter is healthy and happy, and as she says, “I don’t regret it; not one bit.” “I’m so glad I have her in my life. She’s the apple of my eye!” Even today, as Paige is creating a life for herself in another state, Jolene is in constant contact with her and makes frequent visits.
A Father’s Determination
There’s no denying the different roles mothers and fathers have in the rearing of children. While Jolene was busy nurturing and caring for their daughter, Corey was busy providing for them. He will be the first to tell you that the early days of Paige’s diagnosis were difficult on many fronts, but for him, the most difficult part was being away. “Corey had to work a lot, so fortunately my parents would come and stay with us in the hospital when he couldn’t be there,” Jolene said. Corey added, “The oilfield is a little better today than it used to be, but back then if you weren’t there or turned down a job then they’d find someone else to do it.” If someone else did the jobs, it meant not only a loss of income but a loss of benefits, neither of which they could afford to lose.
The fact that he couldn’t be there for the duration of her hospital stays, however, is no indication of the depth of his love. When he was home he was just as involved in Paige’s medical care and he made sure she had everything she needed. When the time came for her to move to Lubbock and start a life of her own, he admits he was not as “okay” with it as Jolene and Paige were. But as is often the case with love, he put his own feelings aside and accepted his daughter’s decision to move away from home. “We’re there all the time though,” Jolene laughed, as Corey added, “My sisters live there too, so that made it a little easier.”
A couple of years ago, his love was on full display when Paige got an infection that nearly cost her her life. Seemingly overnight, her lung function dropped from 99 percent to 72 percent. After two weeks of antibiotics her doctor told her she was still very sick and insisted she go to the hospital right away. She spent two weeks in the hospital and a bronchoscopy revealed a mold called aspergillus. They got rid of the mold but surprisingly nothing changed. She spent the next year doing IV treatments but her lung function dropped even further. Corey could not sit by any longer. He got online and started researching alternative treatments for getting rid of pseudomonas. That’s when he came across an article about something called phages — a virus that a patient inhales to get rid of certain bacteria. Corey’s excitement, however, was offset by Paige’s resistance.
“I was like, ‘No.’ It was across the world by Russia somewhere and I did not want to do that. Antibiotics had always worked for me to that point so I just told him to give it time and let the antibiotics do their job. It will work; just give it time.”
Another year went by without Paige getting better. In fact, she then contracted pneumonia and suffered complications from another bronchoscopy. Her lung function dipped down to 43 percent. Further complicating matters, lab results indicated Paige was resistant to every antibiotic available. There was nothing more they could do for her. Corey couldn’t remain quiet any longer. “After getting that news, my dad told my doctor that he had been researching something called phages,” she said. Fortunately, her doctor was open to the idea and began doing some research of her own. In a matter of days Paige’s team was working with a researcher at Yale University who specialized in phages, in addition to the FDA in hopes of gaining permission to use phages in her treatment.
The FDA ultimately approved the phages and the Yale researcher flew to Lubbock to oversee the procedure. It was a long process — more than three years since he first began researching it — but the day had finally arrived. “I was definitely excited,” Corey said. “I knew…something just told me it was going to work.” And he was right. In a matter of weeks, his daughter went from extremely low lung function and resistance to all antibiotics known to man, to having energy, feeling better, and most importantly, the phages had killed off the pseudomonas bacteria. To their delight, the phages had even gone a step further. The bacteria in her body had developed a biofilm around it, which is what caused her to become antibiotic resistant, and the phages killed off the biofilm as well. Thanks to the phages, her body was once again able to tolerate life-saving antibiotics.
While I was visiting with the Rogers family, a few things became apparent to me. With regard to Paige, I was struck by her unique combination of poise and knowledge and her almost brazen outtake on life that is typical of most 20-something-year-olds. She’s tough. She might be afflicted with a chronic illness, but she is far from weak, and I can see glimpses of her dad in those aspects. Corey is a “do whatever has to be done and don’t make a big fuss about it” kind of guy. Paige favors him in that regard. But then there’s Jolene. Jolene has provided medical care for Paige since the moment she was born and the woman knows her stuff. She is a caring mother and at the same time a well-informed medical care provider. Because of Corey’s work schedule, especially in years past, Jolene has shouldered the brunt of the medical and emotional care for Paige, which means there’s a sense of confident independence about her. I can see the same traits in Paige. She has been known to refrain from calling her parents a time or two when she fell ill while living in Lubbock so as not to “burden” them or cause alarm.
Against all odds, Paige Rogers has built a life for herself that at one time no one thought was feasible. Thanks to the love of her mother and the sheer determination of her father, she is fully equipped to tackle whatever life throws at her.
About the Phages
In an article published on FreeThink.com, writer Kaitlin Ugolik talked to Ben Chan, the researcher at Yale University that discovered Paige’s phages. In the article she explains how Chan has a refrigerator full of sewage and other samples he’s gathered from the U.S., Mexico, Haiti, and several African countries in search of potentially therapeutic bacteriophages, or phages for short. These viruses are literally everywhere – “more numerous than the stars,” Chan says – but when you’re looking for one that eats a specific type of bacteria, you have to go to where that bacteria lives.
That’s how Chan ended up with little containers of sewage from both Connecticut and the Congo that could potentially devour Paige’s pseudomonas. As an interesting side note, one of the sites in Connecticut where Chan took his sample happens to be the hometown of Paige’s live-in boyfriend, Casey. To make Paige’s phages, Chan isolated the various strains of bacteria from a sample of her sputum, grew them in cultures, and then tested different phages on them to find a match. Once he found the match, he flew to Lubbock and the rest, as they say, is history.
In the article, Chan is honest about the possibility that pseudomonas bacteria could eventually become resistant to the phages, too (though some recent research suggests this is less likely than antibiotic resistance). But the success of Paige’s phages could also open the door to new treatments for people around the world with CF and other chronic diseases.