A Philly teen wrestles with her mortality and attends, perhaps, her final prom at CHOP

On a sunny June afternoon, Taj Harris was tired of being tethered to feeding and IV tubes in a chilly room at Children’s Hospital of Philadelphia. With the blinds drawn, Harris and her grandmother watched MTV on a mounted flat-screen. The 19-year-old from Fairmount sat upright in bed in blue pajamas, a pink fuzzy blanket pulled up around her shoulders.

Harris was born with short-gut syndrome, a rare condition that has her body not absorbing nutrients from food because her small intestine is truncated. She had a bowel transplant just before her 16th birthday. That hospital stay lasted nine months.

Now the donated organ — a small intestine — was failing.

In and out of the hospital her whole life, and currently six months into yet another CHOP stay, Harris has missed countless school field trips, birthday parties, and sleepovers. On good days, she says, she dances by herself “with the door closed so nobody can see.” On bad, she falls “into depression,” she said.

Today, she was determined to leave her hospital room, if only for an hour, wearing the fire-red dress draped on a hanger hooked to the metal springs of a rolled-up hospital cot. But she felt nervous looking at the dress, with its heart-shaped bodice, ruffled trim, and a netted shawl studded with jewels. She worried that it would no longer fit. That her fingernail polish, also red, needed a touch-up. Or she’d be “awkward” at the event.

“I’m going to get out and just dance,” she said, vowing to make it to CHOP’s annual prom, her third and possibly last.

The event, held each prom season in memory of 2-year-old Joshua Kahan, who died of cancer, offers a chance for children and their parents to experience a rite of passage at a place where life can be monotonous and uncertain.

“Kids of all ages, no matter what, get to have their first prom here, even if it could be their last one,” said Kiersten Ferguson, of CHOP’s Child Life team, which organized this year’s prom on Wednesday.

For Harris, prom provided a welcome escape from her hospital room and the gravity of her illness. The medicine she takes daily for her stomach has damaged her kidneys. She is now old enough to make her own decisions about whether to start the process for a kidney transplant. Her doctors have been candid about her odds.

“They said I could decide if I want a kidney transplant, but then they also said it’s not 100% that I’ll make it through, so I don’t think I want to get it done,” Harris said, her voice low as a whisper and hard to hear.

Her grandmother, Antoinette Miller, frowned slightly, arching her left eyebrow. On prom day, like almost every day, she sat sentinel at Harris’ bedside, wearing a starchy hospital blanket like a shawl.

“She doesn’t want the surgery because she’s thinking she’s not going to make it,” her 68-year-old grandmother said. “She’s going to make it. She is.”

The teen is Miller’s sole grandchild from her only son. The pair spend so much time together that they bicker and joke like a married couple. When a reporter asked the teen whether she knew anything about the organ donor who gave her the intestine, her grandmother answered.

“A little bit,” Miller said.

“That he’s dead. That’s all,” the girl said.

“Yes, we knew that he had died,” her grandmother said.

The teen rolled her eyes. “You can’t live without a bowel so, like, obviously. I’m just saying. …”

Miller shook her head. “You can tell she’s around adults more than she’s around kids her age.”

Harris misses being with friends, going outside and getting exercise. She had attended Freire Charter High School in Center City, which she loved. She switched to online learning when she got too sick to go.

Her mood lightened when the conversation turned to her prom dress.

She had bought it to wear at her 18th birthday party, which got canceled, either because she landed back in the hospital or because she got bad grades and her father was mad. Grandmother and granddaughter disagreed on which. They did agree that red is her color.

“I feel like I look best in red, personally,” the girl said.

“Oh, yes,” her grandmother added.

Her father, on his way from his job at the Philadelphia Water Department, planned to escort her to the prom in the hospital’s airy Colket Atrium.

Downstairs in the atrium, the party was already underway. Hospital employees cheered and clapped as little girls dressed in frilly princess dresses, toddlers with flowered headbands, and boys in tuxedos or suit jackets walked like Hollywood stars down a rope-lined red carpet. Some wore sashes that read “Prom Court.”

Kelly Reale pushed her 5-year-old son, Colton, down the carpet in a toy push car tricked out in gold streamers and twinkle lights. The boy, who sported a dress shirt and bow tie, has been at CHOP so long he’s stopped asking when he can go home. He’s waiting for a heart transplant. He gets out of breath, but that didn’t stop him from playing Skee-Ball at the carnival-themed prom.

“It’s nice for him to do something fun,” said Reale, 39, of Ocean County, N.J.

A DJ played songs by the Spice Girls and Miley Cyrus. A dance troupe performed breakdancing and led kids in a line dance called “The Waffle.”

Danielle Winkler’s father steered her wheelchair to a table, where two CHOP hairstylists went to work. They wet her hair, applied curl product, and positioned a tiara on her head. Earlier in the day, a Child Life specialist came to her room with an assortment of gowns. She picked a blue satin dress. The 17-year-old from Newtown went to her junior prom in April but had to leave early because she felt sick.

“This is awesome. It feels like a redo,” said Winkler, who is at CHOP for a suspected gastrointestinal disorder.

An hour into the event, Taj Harris had yet to arrive. A CHOP employee texted her. She didn’t reply.

On the speaker, “Unwritten” by Natasha Bedingfield began to play.

Release your inhibitions. Feel the rain on your skin. No one else can feel it for you. … Drench yourself in words unspoken. Live your life with arms wide open. Today is where your book begins. The rest is still unwritten.

Harris emerged from the elevator and glided to the prom runway, escorted by her father in a red polo shirt that matched her dress.

She wore lipstick the color of poppy flowers and strappy, silver sandals. The dress fit her body perfectly.

Her grandmother dabbed tears with a tissue. She was so happy for Harris that she struggled to form words.

“My heart,” Miller said, “is laughing.”

The teen’s father, 49-year-old Edward Miller, soaked up the moment. “My daughter’s beautiful.”

He’s supportive of her decision to forgo a kidney transplant.

“Really, she wasn’t supposed to live this long, but as you can see, she’s still standing here,” her father said. “We cherish every moment we can.”