Johns Hopkins All Children’s Hospital started having trouble with its heart surgery team in 2015. Families had no idea. For years, they continued bringing their children to the hospital’s Heart Institute expecting the best care. But some of the children suffered life-changing injuries. Others died unexpectedly after surgery.
The doctors who diagnosed Sebastián Vixtha’s heart defect told his mother it was serious. But they were hopeful about his long-term prognosis, as long as he underwent three surgeries. “He’s going to be normal, completely normal,” Sandra Vázquez recalled them saying. At 2 weeks old, Sebastián survived a risky heart surgery at All Children’s and returned home. But one month later, he started vomiting and had to return to the hospital. While he was there, his heart stopped. The doctors said his aorta had narrowed. They tried to open it up two different ways. Sebastián seemed to be getting better, so the doctors scheduled another surgery in May. “They clearly told us that this surgery would be less risky than the first,” his mother said in Spanish. But after that procedure, Sebastián suffered a second heart attack. He died on June 1, 2017.
Leslie Lugo was born Jan. 2, 2017, with Down syndrome and a number of serious heart defects often associated with it. Her first procedure on Jan. 12 went well, records show. But after a second surgery that March, she developed an infection deep in her surgical wound. Peer-reviewed research shows such infections occur in a small fraction of heart surgery cases. The doctors and nurses spent eight weeks treating Leslie’s infection with antibiotics and a wound vacuum system. She needed another surgery after that and came out too weak to breathe or pump blood to her body on her own. She died a few days later on May 30.
Leslie’s mother, Ma Candelaria Tellez, said her doctors had told her All Children’s was the best hospital. In the end, she felt deceived. “I don’t recommend this hospital to anyone,” she said in Spanish.
Leslie is buried at a cemetery beside the interstate near the family’s home in Dover. On a windy afternoon this September, her family visited the grave with two bunches of roses, one red, the other pale peach. Her mother washed her headstone, removing the browned leaves and branches that had blown onto the plot. Her father strung up a balloon with the characters from the movie Frozen. The family of five huddled together, the mother’s gaze fixed off in the distance. They stayed until it started to rain.
Jean Kariel Viera Maldonado first got sick in Puerto Rico, where his family lived. One hospital sent him to another. It was a cardiologist who realized his heart was enlarged and said he might be a candidate for a transplant. For that, however, he would need to leave Puerto Rico. The cardiologist recommended three hospitals: the Children’s Hospital of Philadelphia, Boston Children’s and Johns Hopkins All Children’s. Jean Kariel’s parents chose All Children’s because they had family in Florida. Before the transplant in 2017, the family visited Walt Disney World. Jean Kariel sprinted through the parks and rode the junior rollercoaster. His parents hold on to that memory. Shortly after the March transplant, the stitching connecting Jean Kariel’s new heart to his body broke, and he suffered a debilitating stroke. He can no longer walk.
As a newborn in 2013, Alexcia Escamilla survived one of the most difficult procedures in pediatric heart surgery. But after another surgery in 2016 — a procedure that was supposed to be much less risky — Alexcia suffered a stroke that left her unable to walk or speak. Her mother, Rosana Escamilla, never allowed herself to believe the doctors were at fault. A woman of faith, she held a conviction that God had his reasons. But two years later, when she learned other children’s surgeries had gone badly, she spread out her daughter’s medical records and began closely studying each detail. “If there was such turmoil they should have stopped and said, ‘We are going through some changes,’ ” she said. “Maybe they should have hit the pause button.”
Not long after Madeline Hope Rebori was born in 2015, a cardiologist at the All Children’s Hospital Heart Institute said nothing could save her, her parents recalled. Her family got a second opinion from a Stanford doctor, then took her to Cincinnati Children’s Hospital, where surgeons performed a life-saving surgery. Madeline is now 3 years old. She takes tap and ballet. She performed to I’m a Little Teapot at a recent recital. Madeline still needs one more surgery for her heart to be fully repaired. Her parents, Brian and Stephanie Rebori, are optimistic. They intend to take her back to Cincinnati.
Cash Beni-King had multiple surgeries in the five months he was alive. After the first, his tiny heart was too weak to work on its own. After the second, a stroke left him paralyzed. Cash died on July 4, 2017. His mother, Yiniisi Beni, recently created a remembrance wall in the living room, hanging photos of Cash around words like “family” and “love.” Looking at it brings her to tears. His father, Gold King, said he blamed himself for a while. He believes things would be different if he had chosen another hospital for his son. “He would still be here with us,” he said.
Twelve days after she was born, Ca’terriunna McGowan went to Johns Hopkins All Children’s Hospital in hopes of getting a new heart. She was designated high priority on the transplant waiting list. Ca’terriunna had been sedated for most of her life. As she waited for her new heart, she grew sicker. In January 2018, her blood tested positive for a bacterial infection. In March, her heart rate was erratic. Her new heart came in early May. The transplant was a success, records show, but complications continued. Her kidneys and liver started to fail. “She was going downhill,” recalled her father, Glen McGowan. At the end of the month, Ca’terriunna was placed on heart and lung support. She died in June.
Katelynn Whipple needed emergency heart surgery soon after her birth in July 2016. Her aorta, the body’s main artery, had to be lengthened. Her parents thought the surgery went well. But at a followup appointment days after she was discharged, they learned an All Children’s surgeon had left a needle in their daughter’s chest. Katelynn’s parents took her back to the hospital and asked Dr. Tom Karl to remove the needle. Karl said the needle didn’t exist, Katelynn’s parents told the Times earlier this year. The needle was removed during a later surgery at St. Joseph’s Children’s Hospital in Tampa. All Children’s ultimately settled with Katelynn’s family. The hospital will give her $5,000 annually for four years beginning on her 18th birthday, and $25,384 on her 25th birthday, records show.
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