ByTaylor Sisk
Photographs ByLynn Johnson
Published February 1, 2024
• 20 min read
On a mild Saturday morning in early June, Jamie Tezbir braced herself for a grievous decision. Hospital runs had become routine for Jamie and her husband, Don, over the last decade. But this time felt different.
Jamie’s son Jackson, then nine years old, had been born with an incurable brain malformation called lissencephaly that triggers frequent seizures. Through the night and into that morning, the seizures had come every 20 minutes. And now his breathing was in severe distress.
Jamie and Don had recently signed a do-not-resuscitate order; should Jackson go into cardiac arrest, it would be abided by. But were they receptive to intubation? ICU doctors and anesthesiologists stood ready. “It was one of those scary moments,” Jamie said. This, she feared, “was what the end would look like. As has become her practice in fraught moments, Jamie called Carol May, director of the Division of Palliative Medicine and Supportive Care at UPMC Children’s Hospital of Pittsburgh.
A great many advances have been made in medical care that allow children with complex chronic conditions to live longer. But some families, like the Tezbirs, are choosing to prioritize quality of life. May’s team provides palliative and hospice care, which includes liaising with specialists and coordinating logistics for home-based care. They’re there to help realize a family’s wishes for their child. Hospice is founded on a philosophy of “neither hastening death nor prolonging life,” said supportive care division chief Scott Maurer. It focuses on the child’s “physical, emotional, social, and spiritual comfort.”
May, Maurer, and their colleagues believe that, in most cases, home is where comfort and well-being are best nurtured. Bedrooms can be outfitted as mini-ICUs. A specialist is a telehealth screen away. A return to routines is encouraged—the family as one. Intubating Jackson after his scare in June ultimately proved unnecessary. But Jamie and Don know the next critical moment is likely near. They take solace that the supportive care team sees Jackson not as a neurology or pulmonology patient, but as Jackson, their child. They’ve offered the “grace,” Jamie says, to accept what she and Don ultimately decide is best for their son.
Emma Cromlish, age 7, Trisomy 21
Jill Rachau has learned more about the human body than she could ever have imagined. Her daughter, Emma, was born with a rare genetic disease and has experienced several close brushes with death. Each time they leave the hospital, Jill said, there’s something new she needs to process.
“She changes so quickly on us,” Jill says. “We can go from giggling, laughing, playing to checking out because she’s in so much pain.” On good days, Emma sasses the doctors at UPMC Children’s Hospital of Pittsburgh, blows kisses to the nurses, and beams the very sweetest of smiles.
Genevive Mitchell, age 7, Encephalomalacia and Epilepsy
Genivive Mitchell first met Carol May, UPMC’s director of the Division of Palliative Medicine and Supportive Care, shortly after birth, when her major organs were failing and she was taken by ambulance to UPMC. In the years since, May has worked with mom Jessica to provide Genivive the care the pair needs. This entails advocating for Genivive in the hospital, sorting medicine at home, and everything in between. Unable to speak, Genivive communicates through subtle means. Is she sensitive to her mom’s disquietudes? “Oh, god, yes,” May acknowledged during a Saturday visit to check in on the well-being of mother and child. “When Jessica wants to openly express herself—in many different manners—she does so.” Mitchell smiled. She’s a fierce advocate for her daughter.
As a result of this diligent care, Genivive gets out and about quite frequently. But a recent trip, to Southmoreland Primary Center, was different. There, she met the children who would be her classmates. The kids were initially hesitant, unsure. But with a bit of nudging, they leaned close with observations and questions. For the class, it was a chance to understand and appreciate how unique, and similar, we all are.
Jackson Tezbir, age 9, Lissencephaly and Lennox Gastaut Syndrome
In addition to UPMC’s Palliative Medicine and Supportive Care team, Cassie Grassmyer has been a pillar for Jackson’s mom, Jamie Tezbir. On November 7, 2020, Cassie lost her son, Jack, to lissencephaly—the same incurable brain malformation afflicting Jackson. Cassie has helped guide Jamie through the process of making difficult decisions and preparing for the end stages.
Jamie and her husband, Don, don’t want to leave critical decisions to be made in desperate moments. “It could be 30 days; it could be 30 months. We don’t know how long we’ll have with him,” Jamie said. “But having a plan in place makes me feel a lot better.”
Kylie McMullen, age 6, Alveolar Rhabdomyosarcoma
In February 2022, Kylie McMullen was diagnosed with stage 4 alveolar rhabdomyosarcoma. Scott Maurer estimated her chances of surviving it at little better than 10 percent. She was suffering mightily. In consultation with their doctors, her parents, Sean and Kirsten, decided to pursue a maintenance form of chemotherapy and bring Kylie home.
Kylie’s illness was disorienting for her younger sister, Quinn. You could see her trying to process what her family was going through, Sean said. She would tell people that Kylie was “big sick.” But by autumn of 2023, Kylie was doing remarkably well. She’s now treatment free. “I haven’t heard Quinn use ‘big sick’ since probably last spring,” Sean said. For Kylie, from stage 4 to “almost normal,” as Kirsten put it, has been a grueling journey. From mid-procedure video calls with Sean, to building a relationship with her brother, Cam, seeing Kylie’s transformation through family photos “really puts [the past year] into perspective,” Kirsten said.
Nevaeh Lester Harris, age 20, Lennox Gastaut Syndrome
Raynell Lester, a single mother of eight, is clear on what she wants for her daughter Nevaeh, who has a severe form of epilepsy. In consultation with Maurer, Raynell has decided to no longer subject Nevaeh to extreme interventions.
“You want her to have the best possible life, and now we’re at a point in her illness where the hospital might not be giving her the best possible life,” Maurer has told her. He reassures Raynell that in protecting Nevaeh from procedures that are unlikely to improve the quality of her life, “you’re putting her first, and I think that’s the greatest gift of love”—to say, “I will take you as you are, for however long I can have you. And if I have to let you go, I will.”
Stevie Jane Kruger, age 2, Trisomy 18
Erica and Rich Kruger’s daughter, Stevie, was born with the chromosomal condition Trisomy 18. When they made the decision to remove her from a ventilator at UPMC just after birth, and to decline invasive procedures, they were told it wasn’t likely Stevie would live even a few hours. They told Carol May that if Stevie’s time was limited, they wanted to take her home, to the embrace of family and friends. Rich is a police officer; his first-responder colleagues helped facilitate the transition. A house full of folks awaited. “That night was like the craziest night,” Erica said.
Stevie has since celebrated her second and third birthdays. Her community celebrates her life with identical Trisomy 18 tattoos.
Taylor Sisk is a Nashville, Tennessee–based healthcare reporter focused on policy’s human impact.
With her camera and her compassion, Lynn Johnson tackles challenging subjects that often reveal “the heroic nature of humanity.” She was a Pulitzer Prize finalist for her work on National Geographic’s Gender Issue and received the National Geographic Society’s 2019 Eliza Scidmore Award for Outstanding Science Media, in part for her cover story on a groundbreaking face transplant. An Explorer since 2017, Johnson is based in Pittsburgh but spends most of her time on the road. Follow her on Instagram: @ljohnphoto.
A version of this story appears in the February 2024 issue of National Geographic Magazine.
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