Two mothers, one preventable infection

Amanda Caldwell and her husband Brandon Caldwell were thrilled when they became pregnant soon after they started trying. An elementary school teacher, Amanda always knew she wanted to be a parent. Her pregnancy was largely uneventful, but at 37 weeks of pregnancy, she was given a routine screening for Group B streptococcus (GBS) and tested positive. “I asked, Okay, what does that mean? Because it sounded kind of scary,” Amanda recalls. “Oh, it just means we're gonna give you antibiotics during labor and everything will be fine,” the midwife told her. Amanda didn’t give it another thought until she went into labor and was hooked up to an IV; she assumed that it was no big deal. Her son, Reagan, arrived with unusual punctuality, emerging into the world just four hours past his due date. He looked right into Amanda’s eyes. “He was just the most beautiful, perfect baby I’ve ever seen in my life,” she says.

Two blissful weeks went by. Reagan was an easy baby, nursing beautifully, sleeping well, always game for a diaper change. Then his temperament shifted. He became irritable and would go four to six hours without nursing. He cried during diaper changes and scrunched up his face and moaned as if in pain. Amanda changed her diet, worried that something she was eating might be giving him gas. She consulted Reagan’s pediatrician, her lactation consultant, and her community on Facebook, but no one seemed to have answers. Finally, the lactation consultant, worried that Reagan was going long stretches without feeding, told Amanda to take his temperature and bring him in. His temperature was normal at home, but by the time they arrived at the hospital for their appointment, it had risen to 101. They rushed him downstairs to the emergency room. Amanda’s husband, Brandon, a U.S. Air Force pilot, was at work at the time; he was met by colleagues on the runway and told that his son was hospitalized. He drove straight from the base, arriving still in uniform.

The negative consequences of group B strep

Reagan, who had become lethargic and was not eating, was transferred to a larger hospital, Albany Med, where he started having seizures in Amanda’s arms. The doctors took him from her and intubated him to give him antibiotics; he was eventually diagnosed with bacterial meningitis and sepsis, as a result of group B strep, which bloated his face and entire body. Amanda and Brandon were told that Reagan had significant brain damage to both hemispheres. A doctor listed all of the activities he would likely have trouble with: walking, talking, seeing, and hearing. “Literally, everything,” Amanda says.

When the family finally left the hospital, they took home more than 1,000 pages of medical records, along with coolers of antibiotics to administer to Reagan through an IV. Brandon operated the IV because Amanda, who blamed herself for infecting her son with group B strep, was afraid she might make a mistake and accidentally harm him.

Advocating for better group B strep education for pregnant women

Amanda took the next three years off from work to manage Reagan’s care, which included as many as 30 therapy and doctor appointments a month. She wishes she’d known more about group B strep during pregnancy—that she had been given a brochure about how to spot signs of infection and react quickly. She began advocating to have brochures about GBS at her local hospital, and the family has raised tens of thousands of dollars for Group B Strep International, a support network for affected families. A maternal vaccine for group B strep, she says, would be critical for people who have a strep infection but give birth before they can receive treatment with antibiotics, or for those who test negative at 35 weeks but become positive in the remaining weeks before birth.

Reagan’s vision is still slightly impaired, and he has experienced some developmental delays, but in many other ways he is a thriving six-year-old boy. He builds elaborate structures with his magnetized blocks, loves corn dogs and broccoli, and enjoys coloring with chalk in the driveway alongside his little sister Lanie. He often tells Lanie and Amanda how beautiful they are. Amanda feels lucky that they had access to so many resources and specialists, and good health insurance that covered Reagan’s care. But she gives most of the credit to Reagan himself. “He beat the odds like crazy,” she says.

Thembalami Mazibuko always wanted a lot of children. She’s one of the oldest in her large, close-knit family, and caring for her younger sisters and brothers came naturally to her. “I really love kids,” she says. “I love the bonding, the noise…maybe not the stress, but everything else!” When she was 22, she found out she was pregnant with her second child. Her boyfriend and his mom said they would help raise the child while Thembalami finished her degree in human resources at a university in Johannesburg and raised her two-year-old son.

Thembalami’s second pregnancy felt different from the first. She was in a lot of pain and was tired all the time. She went several times to a nearby family planning clinic to hear the baby’s heartbeat and get prenatal vitamins. In her 37th week, she had her first ultrasound, where she could see the baby, who looked as healthy as could be. One August day, while she was in class, she felt contractions begin. When she got to the bathroom, she saw she that was bleeding heavily. She fainted in the stall. Fortunately, a friend was with her and called for an ambulance.

Untreated group B strep causes maternal pain, physically and emotionally

At the hospital, a nurse tried to turn Thembalami away, encouraging her to go to the family planning clinic where she’d received her prenatal care. “I was scared because I was in labor, and I was in pain and I was bleeding. I felt like she didn’t care,” Thembalami says. When the nurse finally checked her, she saw that Thembalami was fully dilated. She was rushed to a bed and told to start pushing. When the baby arrived, she didn’t cry or move like newborn babies usually do. “She wasn’t okay, so they just took her away from me,” Thembalami recalls.

She didn’t see her daughter again until that evening, when she visited the neonatal intensive care unit. “She was attached to a lot of tubes, attached to a lot of machines,” Thembalami remembers. The doctors told her the baby had brain damage as a result of group b streptococcal infection. Thembalami was allowed to touch her baby’s feet and hands but not pick her up and hold her close, the way she wanted to. She spent 30 minutes with her child, caressing her and talking to her, but had to leave when the doctors came in to reset the machines that were keeping the baby alive. Thembalami spent all night praying that her daughter would survive. But the next morning, when she arrived at the ICU, her daughter was gone. A doctor called her into a room where her daughter’s small body was being prepared for burial, and Thembalami was told to say goodbye.

Encouraging pregnant women to take research into their own hands

Neither Thembalami nor her daughter were tested for GBS, nor was she given a conclusive explanation of what had happened. But a nurse from the family planning clinic thought Thembalami’s experience sounded like that of other parents who’d had children with GBS—an estimated one in four mothers in South Africa have GBS at the time of delivery—and referred her to a support network for GBS parents. Thembalami has found a small measure of healing in spending time with her siblings, cousins, and her mother, with whom she is close, but the grief remains near-constant.

Thembalami encourages pregnant women to get involved with maternal vaccine research, especially related to group b strep during pregnancy, such as is being carried out at Johannesburg’s University of the Witwatersrand, “because then your baby might be healthy and survive, unlike mine,” she says. Thembalami is also considering a career change. She was inspired by nurses she met during her daughter’s ordeal and when her beloved grandmother fell ill, some of whom were kind and caring, to pursue a career in nursing. “I like helping people,” she says. “And since I lost my child, and my grandmother, I really, really want to work in medicine.”