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Infants from Puerto Rico get heart surgery at Nicklaus Children's

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Stranded in a Puerto Rican medical center with no power, three infants born with heart defects were evacuated to Miami’s Nicklaus Children’s Hospital for emergency heart surgery within 48 hours of Hurricane Maria’s landfall on the island on Sept. 20.
Three of the smallest and most frail Puerto Ricans made it through the worst of Hurricane Maria hunkered down in a hospital where the windows shattered, the water rushed in, and the power went out.
It was the aftermath that nearly killed them — and the serendipity of professional networking that rescued the three newborns from the storm-wracked island, and brought them to Miami’s Nicklaus Children’s Hospital for emergency heart surgeries within 48 hours of the hurricane’s landfall in Puerto Rico.
Without the surgeries, Amelia Pieve Silvagnoli, Gabriellyz Troche Ruiz and Liam Javi Nieves would have died from the heart defects with which they were born, doctors said.
The infants are among dozens of Puerto Ricans who have come to South Florida for medical care in the aftermath of Hurricane Maria, which devastated the island’s healthcare system .
About 90 patients evacuated from Puerto Rico and the Virgin Islands are receiving kidney dialysis at Florida International University in Southwest Miami-Dade under a hurricane recovery response program coordinated by the state’s Department of Health.
Among the most urgent patients evacuated from Puerto Rico were the three infants with heart defects, who were born in August and September.
“They were the weakest and most vulnerable people in this hurricane,” Dr. Redmond Burke, chief of cardiovascular surgery for Nicklaus Children’s, said Monday. “We were determined to help them.”
Before Hurricane Maria struck Puerto Rico on Sept. 20, the newborns were sheltered at the Cardiovascular Center of Puerto Rico and the Caribbean in San Juan, which specializes in complex heart surgeries for kids.
But the storm knocked out power to every hospital on the island, and the Cardiovascular Center took some of the worst damage. Its windows shattered, its first floor flooded and its blood bank inoperable, the Cardiovascular Center had to evacuate its most vulnerable patients, including Amelia, Gabriellyz and Liam.
Unable to perform surgery on the infants, doctors in Puerto Rico would be able to keep the infants alive for a few days at most, using ventilators and an intravenous medication that keeps blood flowing from the heart to the lungs.
Desperate for help, one of the doctors at the Cardiovascular Center drove out to a highway and found cellphone service. He placed a call to a former student who is now practicing in Miami, Dr. Darline Santana-Acosta, a pediatric cardiac intensivist for Nicklaus Children’s.
Santana-Acosta said the hospital’s executives and medical staff all were eager to help, but the logistics were daunting.
“We had a lot of obstacles in our path,” Santana-Acosta said Monday, describing the difficulties of arranging emergency flights into San Juan’s airport after the storm and trying to communicate from Miami with doctors and medical staff on the island.
For transportation, Nicklaus Children’s turned to its LifeFlight program, an air ambulance service that flies jets packed with advanced life-support equipment for transferring critically ill newborns from the Caribbean, and Central and South America to Miami for medical care.
“They’re basically like a flying womb,” Burke, the cardiovascular surgeon, said of the airplanes.
Santana-Acosta tapped her family on the island to relay messages from doctors on the island to the team of specialists waiting to receive the infants at Nicklaus Children’s.
But there was another catch: the infants’ parents had to sign consent forms allowing their evacuation to Miami, and once again Hurricane Maria transformed an otherwise routine task into a monumental challenge.
None of the parents had stayed with their children at the Cardiovascular Center in San Juan, and at least two of the children’s parents had sheltered outside the capital in cities that were a few hours drive away, with clear roads.
Brian Nieves, who lives in Aguadilla, on Puerto Rico’s northwest coast, used a machete to hack through fallen trees for two days in order to reach San Juan and sign the consent form for Liam to be sent to Miami, said Naialee Perez, the infant’s mother.
“I was having a panic attack,” Perez said Monday at Nicklaus Children’s, describing the ordeal of trying to get her baby out of San Juan.
Once the flight was ready on Sept. 23, Perez learned that there would be room on the plane for only her and Liam. Nieves stayed behind in Puerto Rico.
Jose Troche and Cheira Ruiz, the parents of Gabriellyz, sheltered at home in the town of Guanica, about a two-hour drive from San Juan. Ruiz said she agonized over how her baby was doing after the storm after Guanica lost communication with the rest of the island.
When they finally got word about Gabriellyz, it came from Puerto Rican civil defense workers, who went looking for them after the Cardiovascular Center put out a call through local radio stations, pleading for help finding the baby’s parents.
Ruiz flew to Miami with Garbiellyz on Sept. 24, and Troche joined them a few days later. But they had to leave their 10-year-old son, Derek, in Puerto Rico with family, with whom they have been unable to communicate.
“It’s very sad,” Ruiz said. “We’ve had very little communication with family. They have no water, no food, no gas and no power.”
Once the infants were in Miami, a team of specialists was waiting for them at Nicklaus Children’s. Doctors first had to evaluate the infants to make sure they knew the correct diagnosis, said Dr. Kristine Guleserian, a cardiovascular surgeon who operated on Liam.
“You have to act quickly,” she said, “and do the right surgery.”
To prepare for surgery on Liam, whose heart has a hole in it and cannot pump blood to the lungs, doctors first took a CT scan of his heart, and then used the image to create a three-dimensional plastic model of his heart and adjoining arteries. The model is about the size of a walnut.
In total, the Nicklaus surgeons performed 20 hours of surgeries on the three infants, who are now recovering. But their heart conditions will require more surgeries in the future.

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