Shine The Light: Stephanie and Brian
Published by Stephanie Sanstead on Feb 14, 2020
I see joy all over this house. I see it framed in photos, affixed to refrigerator doors and spilling out of toy boxes.The house belongs to Stephanie and Brian Stillman, and I know, walking into it, that I’m entering a place where the tipping point between health and hardship is very delicate and very real, where a family has been tested in unimaginable ways. But there is no sense of sadness or secrecy or fear here. This household is flourishing. I’m greeted by Stephanie Stillman. Her voice is confident, welcoming. Her physique strong and tone, no stranger to a sophisticated top knot and yoga pant. She’s definitely a mamma bear. Have you ever met someone who has stared down an angry sea and won? They walk and talk differently than the rest of us. That’s Stephanie Stillman. A force bigger than her tried to alter her family’s story and redefine their lives. But she and her husband, Brian, pushed back and the ocean stilled. As I move through the house, I get a sense of who the Stillmans are. There are wall-to-wall, pink-and-white toy bins filled with puzzles, dolls, tea sets, plastic fruit and all manner of things that sparkle. There’s a playroom any child would love, complete with a small couch, a play table and bookshelves loaded with colorful books. One wall is a photo gallery dedicated to Stephanie and Brian’s two daughters, 8-year-old Zoey and 5-year-old Pyper; on the other wall hangs a cork board covered with the girls’ preschool artwork. It is a home, like so many others—including my own—that pulses with the spirit of a child. That’s why things stand out in the Stillmans’ house that aren’t typical. Evidence of feeding tubes in pictures, literature, books and pamphlets. After spending any amount of time at the Stillmans it becomes clear that a big chunk of Stephanie and Brian’s lives has been devoted to providing nourishment to their daughters by any means necessary. Both Zoey and Pyper were born with adrenal insufficiency, a disorder that occurs when the adrenal glands don’t make enough of certain hormones, including cortisol (the stress hormone), which is essential for life. When the girls experience any sort of health crisis, from the flu to a broken bone, their bodies cannot produce cortisol. This condition can be fatal if untreated. The diagnosis complicates any medical problems including and relating to feeding issues. Those issues have been at turns confounding, heartbreaking, infuriating and galvanizing. Had I visited the Stillmans several years ago I probably wouldn’t have found anyone at home. Back then, they spent a lot of time driving around Phoenix to various appointments—to the offices of occupational therapists and physical therapists and caregivers—as they embarked on a medical journey that continues today. — The Stillmans met at the University of Arizona, where Brian was studying regional development and Stephanie was studying communications. They began dating one year after completing college and moved to Phoenix to pursue their respective careers. Stephanie was born and raised in Memphis; Brian grew up in Los Angeles. They married in 2008 in Palos Verdes, Calif. Zoey Stillman was born Oct. 2, 2011, after Stephanie labored for 30 hours. The Stillmans were the first of their friends to have a baby and were elated to begin the new journey. But elation soon turned to concern. During Zoey’s newborn screening the Stillmans learned she had adrenal insufficiency. Zoey spent the first seven days of her life in the NICU and was no stranger to the hospital for that early season. When she was 14 months old Zoey got really sick with the flu. It was impossible to get it under control and led to reflux and several visits to the hospital. Then, after recovering, she caught the flu again. Eventually, Zoey just stopped wanting to eat. So began her feeding challenges. Doctors fitted Zoey with a nasogastric tube (NG tube), which carries food and medicine to the stomach through the nose. Stephanie and Brian spent several days in the hospital with Zoey before she was finally released. But four days later the Stillmans were back again. Zoey wasn’t eating. “As a mother you just feel like you are failing,” Stephanie tells me. “Eating is the most natural thing in the world. I remember constantly thinking, ‘She just has to eat. She has to.’” But she didn’t. She wouldn’t. After a third visit to the hospital, doctors discharged Zoey with the NG tube still inserted. Stephanie remembers telling the nursing staff, You cannot send her home without taking the NG tube out. I try to imagine the trauma. New parents who want nothing more than to provide care and comfort and cuddles to their baby girl suddenly have to learn how to stick a tube into her nose, pushing it down to her stomach, without accidentally puncturing her lungs. Just getting a 16-month-old toddler to hold absolutely still is an epic feat. Now this. Zoey was supposed to have her NG tube for a few weeks. She had it for eight months. Then her doctors and the Stillmans started having serious conversations about inserting a full gastrointestinal tube (G-tube) into Zoey’s stomach. A gastrostomy tube (G–tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It’s one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow. Stephanie remembers her pervasive thought at the time: No Surgery. This is too scary. Too permanent. They ultimately chose not to get a G-tube for Zoey. Around this time, in 2012, Stephanie found Feeding Matters (then called Popsicle). The organization introduced the Stillmans to several feeding programs at Phoenix Children’s Hospital, and provided information about GI doctors, specialty feeding therapists, OT sensory-related therapists and nutritionists. Stephanie says the connections they made through Feeding Matters gave her and Brian their first feeling of true hope during the most stressful time in their lives. In 2013, Stephanie quit her job as a Pilates instructor to keep up with the feeding schedules, the therapies and the making of Zoey’s all-natural food. Zoey never actually received a PFD diagnosis, which meant the Stillmans paid for many therapies out-of-pocket. They had to get really creative to get treatments coded for insurance. Stephanie thinks that if Zoey had received a PFD diagnosis, they could have done more private therapies and potentially eliminated the tube sooner. It also could have given them a sense of what they were dealing with. As far as they knew, Zoey just wouldn’t eat—perhaps it was reflux, perhaps not. One thing was certain: As parents, they battled feelings of guilt and worried constantly that maybe they did something wrong or failed their daughter. Around the time Zoey turned 3 years old, Stephanie and Brian established a rhythm and routine with her. Zoey was eating and maintained a healthy weight, which enabled her to curtail her hospital visits. The Stillmans embraced their feeding-issue story and became very involved in Phoenix Children’s Hospital’s food school and group-feeding programs. Stephanie vividly remembers the day she stopped counting Zoey’s every calorie and journaling every morsel of food. This freed up space in her mind where these daily responsibilities always loomed. This is not the picture of early parenthood the Stillmans envisioned when they started their family. But it’s a life they embraced with grit, grace and tenacity. Lying in bed, thinking about how Zoey’s NG tube, bag and pole were holding her back from learning to walk, Stephanie’s pillow would become wet with warm tears. Still, as the seemingly impossible gradually became routine, the Stillmans were excited to grow their family. Knowing that adrenal insufficiency was genetic and a second baby had a 1 in 4 chance to have the same condition, they plunged headlong, into the next chapter of their story. — Pyper Stillman was born Dec. 2, 2014. Her newborn screening picked up the presence of adrenal insufficiency. She was in the NICU within the first 6 hours of her life and stayed there for 24 days. We’ve got this, Stephanie remembers thinking. We’ve walked this road. We have the whole team in place from Zoey’s journey. Twenty-two days after Pyper’s birth, at Stephanie’s urging, the Stillmans got to take their new baby home for Christmas. Pyper had an NG tube, and there was once again plenty of PT, OT and speech therapies in the Stillmans’ future. When Pyper was 4 months old, the NG tube came out. Then she got pneumonia. The NG tube had to be reinserted. When Pyper was 6 months old, doctors conducted a swallow study and found that she had been silently aspirating—food or liquid was entering her lungs. After a bronchoscopy and a laryngoscopy, then consultations with GI specialists, pulmonologists and ENTs, Stephanie and Brian still had not received a diagnosis that explained why Pyper was aspirating. On Sept. 30, 2015, they removed her NG tube; after three more hospital stays Pyper had a full G tube inserted. She was 8 months old. The Stillmans got all of their familiar support teams in place. That’s when they rediscovered Feeding Matters. They needed the assistance more than ever. “I remember Feeding Matters being a place where other moms could give me advice, listen and understand,” Stephanie says. “None of our other friends or family could relate to the struggles of feeding. They couldn’t fathom the amount of medical supplies or worry that came with every meal. I finally had a connection to other families that were going through similar things. I didn’t feel crazy anymore. It was easy to second guess ourselves those days. I felt like if something wasn’t working I had a place to turn that wasn’t a doctor’s office where I would likely have to wait weeks for an appointment.” Pyper had even more complicated feeding issues than Zoey, with a diagnosis of Silent Aspiration. She had a physical response to even seeing a dab of baby food on a therapist’s nose. She needed OT to even look at food, touch food, be in the same room as food. Read that again. Now think of a child you love. Think of a child you love being physically uncomfortable just being in the same room as food. Now imagine being their parent. Weeks of feeding programs followed, with the goal of getting Pyper to take half of her food orally. She was subjected to painful Modified Barium Swallow Studies (MBS), a fluoroscopic procedure designed to determine whether food or liquid is entering a person’s lungs. The Stillmans visited seemingly every specialist at Phoenix Children’s Hospital—aerodigestive specialists, immunology specialists, hematology specialists. They filled out what felt like a million intake forms, spent hours in waiting rooms and asked dozens of questions without getting answers. Then it came—difficult news dressed up as relief in the form of a diagnosis: Familial Dysautonomia. It’s a genetic disorder that affects the development and survival of certain nerve cells. The disorder disturbs cells in the autonomic nervous system, which controls involuntary actions such as digestion, breathing, production of tears, and the regulation of blood pressure and body temperature. Every child with this disorder aspirates and has low tone. Pyper is the only child in the world ever to be diagnosed with both Familial Dysautonomia and adrenal insufficiency. It’s hard to explain what that life looked like. Imagine first the tangible necessities. The feeding-tube supplies: pump, medical pole with wheels, bags for formula, formula pouches, adapter ports, the G-tube insertions, the NG tube, innumerable bottles of PediaSure. Then there were percussion vests, cough-assist machines, inhalers, blood-pressure monitors, glucose readers. The Stillmans’ refrigerator was filled with medicines, and their sink-side drying rack was perpetually packed with supplies that needed to be cleaned daily: bi-pap supplies, cough-assist masks, syringes and more. Beyond all that, there were the countless hospital visits and sleepless nights in NICU, the coffee-fueled hours spent at the kitchen table trying to learn about home healthcare and insurance coding, the Googling of specialty formulas from Germany. Distractions and excursions were difficult. A trip to the zoo, a common outing for many parents, was made nearly impossible by the realities of being tied to therapy and feeding times. The orange tube across your child’s face eliciting stares from passersby, and the threat of a tube withdrawal away from the sterile and safe environment of home weighed heavy on her parents’ minds. — It needn’t be said, but I’ll say it anyway: Most of us don’t spend much time thinking about our children’s relationship with food. Eating is a routine. It occurs three times a day, at every social engagement, every holiday, every birthday party. We can’t fathom the isolation that engulfs children and their parents when traditional feeding is not accessible to them. Kids’ peers are acutely aware of who or what is different. Even as adults we are susceptible to thinking, How does somebody not eat? It’s intrinsic. Empathy is a difficult bridge to engineer, especially for children. The stones must be laid by the hands of caring parents. Stephanie tells me about the time she stood at the front of Pyper’s pre-K classroom singing a Daniel Tiger jingle: “In some ways we are different, but in so many ways we are the same.” Fighting back tears, she hoped she could protect her daughter with the help of a sweater-clad plush tiger who wants to know if “you’ll be his neighbor.” She encouraged her daughter’s classmates to find ways that they were the same as Pyper in spite of the “different” way she has to eat and drink. Listening as Stephanie graciously walks me through her family’s story, even—and especially—the painful parts, reinforces and expands my understanding of a mother’s power. It’s impossible not to be moved by the depth of her love for Zoey and Pyper, and the persistence with which she fights for them. In some ways we are different, but in so many ways we are the same. I saw joy everywhere in the Stillmans’ house because of the familiarity of things—framed photos and toy bins and preschool artwork. I now know that, in this home, sameness is hard-earned. In my mind, that only magnifies the joy, and I can’t help but take a little with me when I leave.