It was the day that Brianna Manns, mother of conjoined twins Kameron and Kaydon Hayes, had long dreaded. The sons she had sought to keep alive for more than 16 months were dying.
The infants were fighting an infection. Their shared heart was beating erratically and wasn't pumping well.
When she walked in the room to visit them Thursday, "Kameron was crying and crying and crying," said Manns, who recalled stroking the boys' heads, trying to console them.
The boys, joined at the thorax, had defied the odds in March by reaching their first birthday. Medical experts said their defective heart could not sustain them for long, they were not candidates for a heart transplant and they could not be separated.
For a time, their health had improved enough that plans were being made to transfer them home, even though their prognosis was still poor. Manns spent several hours a day at the University of Illinois Medical Center at Chicago, playing with her sons and assisting with their care.
Now Manns watched helplessly as a rush of health professionals performed emergency procedures in an effort to resuscitate them.
The twins had faced serious obstacles from the start; doctors expected them to be stillborn. Manns had the option of terminating the pregnancy but decided she wanted her sons to experience life, however short.
"I had the feelings that any mother would have," Manns said. "I wanted my children to experience life to the fullest, to whatever extent that it might be."
Though conjoined twins are rare, parents and health professionals often grapple with heart-wrenching decisions about how far to go with medical interventions. Many of the Hayes twins' caregivers agonized about whether their treatments were causing excessive suffering, said Lisa Anderson-Shaw, director of the medical center's clinical ethics consult service.
The boys' short lives also raised broader questions about the ethics of providing high-cost care to infants with a poor prognosis. Hospital charges for the twins reached $5.6 million.
"The babies survived much longer than most of the providers anticipated, but it was also because they had intensive care for (almost) 17 months," Anderson-Shaw said. "At the end of the day, when you think of this particular case, you have to ask: Should we have? And clearly the answers are going to be different for different people."
Although the boys had to undergo many medical interventions, some of them painful, they also lived long enough to develop personalities and interact with relatives and caretakers. They would hold each other's hands and sometimes poke each other in the face.
Kaydon was the laid-back, sociable one; Kameron, the more curious.
In the days before their deaths, monitoring equipment indicated that their heart was under increasing stress.
"On the day they died, they were showing signs that the heart wasn't pumping adequately," said Dr. Chinedu Oranu, a pediatric intensive-care physician at University of Illinois Medical Center.
The twins were treated with medications to regulate their failing heart, but their heart rate fell precipitously and their breathing became labored.
"We took them off the breathing machine and manually bagged them because we wanted to give them a lot of air in a very fast way," Oranu said. "Ventilators were unable to do that."
Manns said she was torn about what to do as doctors and nurses struggled to save her sons. From the beginning, she had made a commitment to ensure they got all available treatment to keep them alive as long as possible.
"I was thinking I didn't want them to stop," she said Friday. "I was fighting it (their deaths), but at that point the medicine wasn't working. It wasn't really helping."
So she told them to stop. The twins died Thursday about 7:40 p.m.
"They took one big breath out, and then they wouldn't come back," Manns said tearfully.
After they died, Manns took turns holding them with the boys' father, Eric Hayes.
Oranu said the boys likely died of pulmonary hypertension, which caused their severely malformed heart to fail.
"Their heart could not support their body," he said.
"They weren't in any pain," Oranu said. "They were sedated a couple hours prior, so they were fairly comfortable before their heart rate began to drop. They never regained consciousness, and they expired at the same time."
The boys' maternal grandmother, Yolanda Butler-Hamer, had scoured the Internet hoping to find a medical center that could separate the infants and give them a heart transplant. To the end, she never gave up hoping.
"Those babies (angels) came and taught us many valuable lessons: first, to love one another unconditionally," she told friends and family in an email Friday.
Manns said the twins, her only children, lived a meaningful life and knew they were loved.
"I have no regrets about the decisions I made," she said. "I went in with the best intentions."
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