News

'So many beautiful stories to tell:' Unforgettable patients of Riley Hospital's 100 years

M.Wright45 min ago

INDIANAPOLIS - The medical records scrawled on yellowed paper 100 years ago list Mark Noble as Patient No. 1.

Mark was a frail, weak boy who couldn't walk, an 11-year-old from Decatur called a "helpless cripple" by the newspapers that wrote front page stories when he became the first patient admitted to James Whitcomb Riley Hospital for Children 100 years ago.

The new pediatric hospital was the buzz of the city, an eight-year memorial in the making, built after Riley's friends got together to find a permanent way to honor the famed poet who died in 1916.

Mark arrived at Riley in the arms of his father with his mother by his side and photographers capturing a historic moment in Indianapolis history - the opening of a state-of-the-art children's hospital that would draw patients statewide and, for the next century, patients from across the country and world.

The Nobles had no idea as they dropped off their son, they were leaving him at a hospital that would go on to be named one of the nation's top pediatric institutions time and time again. They just wanted him to be "like the other kids," they said at the time.

Mark was brought to Riley to be treated for polio, which had struck when he was three years old, weakening his legs and leaving him unable to walk. Mark couldn't go to school, and he couldn't do what he wanted to most, play baseball with his friends.

During his 10-month stay at Riley, Mark was fitted with braces, learned to use crutches to walk, and was able to stand without support on his left leg. He went on to graduate from high school, work in printing, serve as Whitley County treasurer and earn his pilot's license. He married his wife, Antoinette, and had a son Dennis Mark.

Noble, who died at 70 in 1984, lived an incredible life and returned many times to Riley for anniversaries, celebrations and to visit patients. He never forgot what Riley did for him. "This hospital changed my life," he once said.

For 100 years, the hospital, now named Riley Hospital for Children at IU Health, has been a place of groundbreaking medical procedures and a haven for millions of patients, today treating hundreds of thousands of children a year.

As the hospital marks a century of service and celebrates the anniversary of its founding Monday, we look back at some memorable patients who have come through Riley's doors.

But former Riley physician-in-chief Dr. Richard Schreiner reminds us, they are no more remarkable than any other Riley kid.

"Every single child we have treated inside the hospital mattered, no one was more important than the others. There are so many beautiful stories to tell and there is no way we could ever in any capacity scratch the surface in telling them all. Riley is just a beautiful place."

Racial equity in medicine: The Gaither quints

Riley was a frontrunner in social justice when it came to providing medical care to all patients. In 1921, three years before the hospital opened, the James Whitcomb Riley Memorial Hospital Bill passed, giving the pediatric institution authority to treat all children ages 16 and younger from any Indiana county, regardless of income or race who are "afflicted with a defect, disease or deformity, presumably curable or needing a special study for diagnosis."

That made Riley a rarity at the time and one of the earliest hospitals to accept all children, "where race should not be a topic of consideration when it comes to accessing healthcare."

As a result of the bill, in 1983, the Gaither quintuplets were transferred to the neonatal intensive care unit (NICU) at Riley after being born six weeks prematurely. They became the first known surviving, naturally conceived Black quintuplets in the United States and the first set of quintuplets in Indiana.

Suzanne and Sidney Gaither and their five babies, Ashlee, Joshua, Renee, Rhealyne and Brandon, went on to become media sensations. Geraldo Rivera, Maury Povich and Montel Williams all hosted the Northeastside family on their talk shows. In 1994, the Gaithers were featured in a commercial for McDonald's.

Other racial advances at Riley: In 1972, John A. "Jack" Smith, MD is named the first Black faculty physician and the first Black tenured professor at the Indiana University School of Medicine. In 1976, Eric Yancy becomes the first Black pediatric resident to work in the NICU at Riley.

Dr. Yancy The remarkable story of Riley Hospital pediatrician who will sing anthem at NCAA finals

A medical first: She received her twin brother's heart

When Paula Whisman gave birth to twins, Alison "Paige" and Tyler, in April of 1990, there wasn't joy. Mostly there was fear. It was a devastating, scary time. Tyler was born brain dead, and Paige had a critical heart birth defect.

When Whisman and her husband, Timothy, of Cicero were approached by doctors about the possibility of allowing Tyler's organs to be donated for transplants, they asked if their son's heart could be used to help their daughter.

Laboratory tests revealed that Tyler and Paige matched in four of the six key factors used to determine the degree that a donor heart would be accepted. With those results, the first ever twin-to-twin heart transplant in the world was performed at Riley by Dr. John W. Brown, a renowned pediatric heart surgeon.

On April 25, 1990, Paige cried for the first time with her brother's tiny, strawberry-sized heart beating inside of her. "She has really come along with this well and as easily as any baby we have had that we transplanted," Dr. Brown told IndyStar at the time. "She's had an unusually smooth course."

Paige not only received a healthy heart from her brother, but soon gained 1.3 pounds, getting stronger much quicker than anyone expected. Once believed impossible, Paige was put on a schedule to go home.

"Recovery right now has been fantastic. Nothing could be better," said cardiologist Dr. Randall Caldwell, the medical director of the pediatric heart transplant team at Riley in 1990.

News of the groundbreaking operation at Riley quickly began to spread and the Whismans appeared on national network talk shows, including ABC's "Good Morning America" and "This Morning" on CBS.

In 1996, at the age of six, Alison Paige's parents called her "a typical energetic girl" as she got a tour of the White House with plans for a trip to Disney World.

Dr. John Brown After starting work on the same day in 1978, these Riley heart doctors will retire Jan. 1

Trixy Taylor: From being deaf to beautiful sound

Before Trixy Taylor came to Riley and met Dr. Richard Miyamoto, her parents had to stomp their feet to get her attention. The world was silent to Trixy who could only feel vibrations.

The 11-year-old Mishawaka girl had been deaf since an attack of meningitis when she was six. But on May 31, 1983, she became the first child in Indiana to receive a cochlear implant and she received the gift of sound.

Trixy's operation was performed by a team of physicians at Riley, led by Dr. Miyamoto, a surgery that implanted an induction coil and two wires called electrodes in Trixy's inner ear. An external unit stimulated by a microphone turned sound into electrical current and transmitted it through the wires to the implanted coil. The electric current then activated the ear's nerves so that Trixy could hear a beeping sound that varied with the pitch and duration of the actual sound.

After the implant, Trixy was able to distinguish between human voices and other sounds, her mother Deborah Taylor told IndyStar in 1983. She no longer had to use lip reading to know if she was being spoken to. Instead of stomping their feet, her parents could simply say her name.

In 1983, the team at Riley in Indianapolis was among four cities in the country, including Los Angeles, Houston and Oklahoma City, which had performed the operation on a child since the Federal Drug Administration approved it for pediatric use earlier in the year.

Dr. Miyamoto went on to become a trailblazer in the field of cochlear implants, even as fellow otolaryngologists from around the world questioned the procedure's long-term success.

"The ear is such a complex structure and thinking any manmade little widget you're going to stick in there is going to do anything? Even a lot of leaders in our field just thought this was a dead ender. It's not going to go anywhere," Dr. Miyamoto said in 2017. "But I figured, 'Well, we've got to at least find out how far it can go.'"

In more than three decades, Dr. Miyamoto implanted thousands of patients, including at least a dozen under the age of one. In 1995, he fought the FDA to put a cochlear implant in 16-month-old Grant Phillips (the rules at the time said a child had to be at least three). Grant became the youngest patient in the world to have the operation.

As Grant made out his wedding invitations years later as an adult, there was one person he knew had to be there – the doctor who changed everything for him.

"He just is doing so well," Dr. Miyamoto said. "His wife didn't even know he had a cochlear implant until she dated him for quite a while. That's how good he is."

Ryan White: Fear and discrimination, but not at Riley

Ryan White was tiny, six days old, when his health battles began, diagnosed with severe hemophilia, a condition in which the ability of the blood to clot is critically reduced, causing extreme bleeding, even from a slight injury.

Doctors prescribed the soon-to-be approved Factor VIII, a treatment for hemophilia that was a blood-clotting protein. When exactly Ryan received the contaminated dosage of Factor VIII is unknown, but that batch was later found to have infected 6,000 to 10,000 hemophiliacs in the United States with HIV.

Around his 13th birthday in 1984, Ryan started feeling sick and weak. His temperature spiked and he began vomiting blood. Inside Riley on Dec. 17, 1984, Dr. Martin Kleiman told Ryan he had AIDS. His T-cell count was 25. The T-cell count of a healthy individual is 500 to 1,200.

Jeanne White asked the doctor how long her son had to live. Most AIDS patients, Dr. Kleiman told her, lived just months.

Ryan became known around the world as a fresh-faced boy with doey brown eyes, stricken by a disease that most people at the time thought plagued only gay men and IV drug users. Ryan became the face of an entirely new population of people contracting AIDS and, for many, it was a face that terrified them.

Acquired immunodeficiency syndrome caused a severe loss of the body's cellular immunity, greatly lowering the resistance to infection. People were catching the virus and dying months later. In Ryan's nearly six-year fight with AIDS, he battled discrimination and accusations, saying once that he was treated as a "teenage pariah."

Ryan and his family were the butt of jokes, target of vandals and he was the victim of vicious rumors. "Sheer panic surrounds me," he said. But not at Riley. The hospital was a haven to Ryan who was seen as one of the bravest patients to ever walk through the institution's doors.

Ryan was beloved by the hospital staff and fiercely protected and cared for by Dr. Kleiman, who became a friend and father figure to the boy. He also was greatly respected for his willingness to talk about having AIDS at a time when many patients tried to hide their diagnosis.

"Here comes Ryan who is not afraid to speak out and he is not the face they expected to have AIDS," Dr. Elaine Cox, chief medical officer at Riley, who was a fourth-year medical student at the hospital when Ryan died, told IndyStar in 2020. "It was a moment of just stark education of the public that this was not the disease they had formed in their mind. This was something different."

Few knew anything about AIDS, even experts of the time, said Dr. Schreiner, who was the physician-in-chief at Riley when Ryan was at the hospital. As Ryan continued to live year after year, some in the medical field became skeptical of his diagnosis, Dr. Schreiner said.

But as April neared in 1990, Ryan's body had worn down. As he hosted an Oscar afterparty with Nancy and Ronald Reagan, he couldn't breathe. On a phone call to Kleiman, Ryan told his doctor he couldn't fight any longer. He just wanted to be back at Riley.

Ryan was admitted to the hospital with an acute respiratory infection March 29, but was moved to the intensive care unit shortly after. On the morning of April 8, 1990, Kleiman gave one final medical update on Ryan to the news media, who had gathered at the hospital every time he was admitted.

At 7:11 a.m. Sunday, April 8, 1990, Ryan White died inside Riley with his mom Jeanne, sister Andrea and Elton John by his side.

"He was the bravest patient I had."

A brave Riley patient Ryan White: Inside his life and death from AIDS

Qudrat Wardak: A heart wrenching loss

Qudrat Wardak captured the hearts of the world, a wide-eyed baby boy with a sweet smile, despite the pain he was in, who made an improbable journey from a rundown Afghan refugee camp to Riley for life-saving surgery.

"It was a mission of mercy led by Indiana National Guard members who discovered the dying infant clinging to life in a mud and canvas hut not far from their camp near Kabul," IndyStar wrote in 2015 .

Qudrat, a fragile 14-month-old, and his father Hakim Gul Wardak traveled more than 7,000 miles — and a world away from their squalid camp — to an operating table at Riley where Qudrat had life-saving heart surgery in February 2005. It was funded with the help from Central Indiana Rotary clubs and Riley Hospital for Children's Gift of Life Program.

The operation was done to repair a hole in Qudrat's heart and correct a more serious congenital heart defect called transposition of the great vessels in which the vessels are reversed, causing not enough oxygen to flow from the heart to the rest of the body.

The surgery was a success, Qudrat appeared to be thriving and doctors were thrilled to give the Wardats the green light to go home. But only two days after he returned to Afghanistan and two months after surgery, on April 15, 2005, Qudrat suddenly and mysteriously died.

The story crushed the team at Riley and those who had been following Qudrat's story around the world.

Riley doctors had sent Qudrat's father home with instructions to give him Lasix, a diuretic frequently prescribed to cardiac patients, and aspirin once a day, Jon Mills, Riley spokesperson at the time told media after the boy's death.

Inside the hospital, Dr. Robert Darragh said there had been no signs at Riley that anything was awry when Qudrat was released to go home. But home for Qudrat was a different environment than the one in Indianapolis where he had recuperated, said Darragh, the pediatric cardiologist who evaluated Qudrat before his discharge.

"As many as one in four children in Afghanistan dies before the age of five," said Darragh. "His world is certainly not what any of us would think we want to live in. Do I want any child in that environment? No."

Per Muslim custom, no autopsy was performed and Qudrat's cause of death remains unknown nearly 20 years later. But his memory lives on.

Jim and Roberta Graham, the Brownsburg couple who took in Qudrat and his father after the 2005 surgery and became the toddler's "American grandparents," have raised hundreds of thousands of dollars to bring medical care, education, clean water, economic opportunity and hope to the people of the remote, impoverished area in northern Afghanistan.

Hakim Wardak's experience in America and with Riley inspired a personal transformation. He was reunited with five children he had given up because he couldn't afford to feed them. He went to college. He built two schools and a medical clinic.

Hancock County Superior Court Judge Terry Snow, one of the National Guard officials who helped bring Qudrat to Indiana, reflected on the bittersweet experience in a 2015 IndyStar .

"We like to say," Snow said, "that the ripples of Qudrat are still being felt today."

Qudrat's journey to Riley Nearly 20 years later, Qudrat's gift goes on

Tyler Trent: Leaving a research legacy

Before Tyler Trent's death, he got to name the tumor tissues he donated for research, becoming one of the first osteosarcoma patients at Riley to do so. In years and decades and centuries to come, medical students studying the aggressive bone cancer osteosarcoma may very well see a medical case in a textbook with tumor tissues named TT1 and TT2.

That's Tyler Trent — T squared.

"I feel like I'm getting to view my legacy come to life," Trent told IndyStar in December 2018, less than two weeks before he died. "I'm incredibly thankful that I'm getting to see the impact tissue donation is having. Most people don't live long enough to see their impact but I'm getting blessed with that."

It was the summer of 2014 when Trent was playing ultimate Frisbee, despite an awful pain in his right arm. He grimaced, threw a long pass and his upper arm snapped in two. That was the osteosarcoma, eating away at his bone, making it weak.

Doctors repaired Trent's right arm with titanium. He beat the cancer and was declared free of the disease. But in 2017, just four months before he was to head off to Purdue University, the osteosarcoma returned. A second tumor appeared in his pelvis.

This relapse tumor meant Trent was battling a beastly form of the disease. And it is those tumors that return, the relapsed tumors, where the medical world lacks research, Jamie Renbarger, one of Trent's doctors at Riley, section chief of hematology/oncology and head of the pediatric precision genomics program, told IndyStar in 2018.

As Trent and his family prepared for surgery to remove the tumor from his pelvis, Renbarger and a team at Riley, including orthopedic surgeon Dr. Dan Wurtz, talked to Trent about donating the tumor for research.

"Even in the face of knowing this life-threatening disease had come back he had this passion to really want to live life," said Renbarger, "and to make a difference."

Jeremiah Cox: Incredible resilience

Jeremiah Cox seemed fine, perfectly healthy that fall Saturday in 2018, but he woke up the next day vomiting and had a high fever. As the hours wore on and his fever climbed to a worrisome level, his mother Ashley decided took him to Riley's emergency room. There, she learned her son was in the early stages of sepsis.

"Jeremiah's body was mounting an immune response to an infection and releasing a wave of potentially toxic chemicals that could wind up being every bit as dangerous, if not more so, than the infection itself," IndyStar wrote in November 2018 as it followed Jeremiah's story. "Jeremiah was immediately admitted to intensive care. There, his condition rapidly deteriorated."

"If you put the kids that we take care of in this hospital with sepsis on a scale of 1 to 10, Jeremiah was a 10-plus," Joey Hobson, a pediatric critical care physician who helped care for Jeremiah, told IndyStar .

Riley saved Jeremiah's life but was unable to save his limbs. His parents took their two-year-old son home, worked with him and he began to thrive. Three months later, Jeremiah had made remarkable progress adjusting to his life without arms or legs.

He had taught himself to scoot around the house and other creative ways to move. "He does good for what he has," Ashley said at the time. "I thought it would be forever until we got to this point."

More memorable Riley patients

Van Arsdale twins: In 1943, Hilda Van Arsdale gave birth to twin sons seven weeks early at a time when most babies didn't survive at that gestation. Though Dick and Tom each weighed four pounds, they needed incubators and special care because their mother had RH negative blood, a complication that most physicians knew little about at the time. Dr. Lyman Meiks was called in on the case at Riley and "he saved my twins," said Hilda in a 1964 newspaper . "My husband and I owe so much to Dr. Meiks. If he had not been in Indianapolis, our boys would not have survived." Once the Van Arsdale twins left Riley, they began to grow, eventually reaching a towering 6-5, and they both became basketball superstars, spending more than a decade in the NBA.

DeSean Foster: It was 2020 when DeSean Foster's liver mysteriously started failing, something doctors at the time called "puzzling." He was forced to go on dialysis and put on the liver transplant list. After DeSean received his new liver at Riley, IndyStar sat down with him and his mother. They talked about how grateful they were for DeSean's second chance at life, and how they wanted to thank the family whose relative had given that new beginning to him. But in 2021, just months after the transplant, DeSean was diagnosed with neuromyelitis optica spectrum disorder, a rare autoimmune disease that affects the central nervous system and causes inflammation in the nerves of the eye and the spinal cord. In September, DeSean, a former standout basketball player at Hammond High in northwestern Indiana, died at the age of 19.

Chase Smith: IndyStar documented Chase and Sadie Smith's lives for 11 months as they settled into a new marriage and battled Chase's terminal cancer. Chase died April 4, 2021 in his home with his beloved Sadie by his side. He was 19. Here is their series of stories.

Brody Stephens: The tiny basketball phenom battling leukemia for the second time in his life captured the attention of a sports nation as Brody was seen dribbling a basketball in the halls of Riley in a hospital gown with an IV cart being rolled behind him by nurses. It also caught the eye of Brody's hero Steph Curry who, in 2016, visited Brody at Riley . "I had the easy part, showing up and getting to know Brody," Curry told IndyStar at the time. "And hopefully giving him a lasting memory for a long time. We had a great time." Brody died in April 2017 at the age of 8. He was small but mighty, a standout basketball player and a lover of all things sports, especially trading cards. Brody's dream was to one day open his very own sports card shop.

Never forgotten

Learn more about a century of momentous firsts, brave patients and renowned physicians and staff at Riley in the new book, "Cherishing Each Child: Riley Hospital for Children, 1924-2024, available on Amazon .

0 Comments
0