Orlando Toddler Leaves Hospital After Long Battle of Liver Disease
A lifesaving liver transplant gives 16-month-old Danilia a second chance at life.
When Danilia “Amor” Aquino was born prematurely at 26 weeks in Orlando on August 26, 2019, she was showing early signs of liver disease. Two months later – at the start of the COVID-19 pandemic – she was diagnosed with biliary atresia, a rare, genetic, life-threatening liver disease that only appears in infants.
The medical team at Danilia’s local hospital performed the Kasai procedure – considered one of the most effective treatments of this disease – in which any problematic bile ducts outside the liver are removed, and the small intestine is attached to the liver. Unfortunately, the procedure was unsuccessful.
Danilia began to have complications and was intubated for 54 days. Her parents turned to their trusted gastrointestinal (GI) doctor in Orlando who advised the family to have Danilia evaluated for a transplant at the Miami Transplant Institute (MTI), a joint program between Jackson Health System and UHealth – the University of Miami Health System.
“None of our children have had any medical conditions,” said Danilia’s mother, Jennifer Cotto. “On top of the stresses of our sick newborn, the pandemic had just begun, and her father and I were getting married February 2020.”
At the beginning of 2020, the family met with Jennifer Garcia, MD, the Miami Transplant Institute’s medical director of pediatric transplant services. Danilia’s parents instantly connected with Dr. Garcia and the medical team, who had experience with these complex cases at MTI, the largest transplant center in the nation for the second year in a row, and among the top six for pediatric liver transplants.
“Danilia was extremely small (8.8 pounds) and undernourished as a result of not only her liver disease but her prematurity and bowel complications following her Kasai,” said Dr. Garcia. “She needed Total Parenteral Nutrition (TPN) – a procedure where fluids are given intravenously to provide her with the nutrients her body would need, in hopes that this would increase her chances for transplant candidacy.”
The family returned home with their newborn daughter just nine days before their wedding – a meaningful moment for them that they were able to share as a family.
Shortly after, Danilia experienced aggressive gastrointestinal bleed, common in patients of biliary atresia and liver failure. Danilia and her father were immediately airlifted to the pediatric intensive care unit (PICU) at Holtz Children’s Hospital at the University of Miami/Jackson Memorial Medical Center. Once she arrived, Asumthia Jeyapalan, DO, a University of Miami Health System pediatric critical care physician at Holtz Children’s, would join a multidisciplinary medical team to care for her. The team included doctors, nurses, and respiratory therapists from transplant, intensive care, infection control, ear, nose and throat, nephrology, and neurosurgery.
“With COVID-19, we were facing many restrictions, and we were worried what would happen if a transplant patient would get the virus. There were so many unknowns,” said Dr. Jeyapalan. “Are we going to find a donor? From the ICU perspective, we needed to make sure she was going to tolerate transplant surgery.”
At Holtz Children’s, the approach is to practice family-centered care, which allowed the family to develop strong relationships with the medical team caring for their daughter. They also were an integral part of Danilia’s recovery, working closely with support departments in the hospital, including Child Life and Music Therapy.
“I think our entire team would agree that Danilia has shown incredible resilience and strength through the many life-threatening medical hurdles she has faced,” said Amanda Alladin, MD, a University of Miami Health System pediatric critical care physician in the Holtz Children’s PICU. “Her parents have been steadfastly at her side and have been true members of Danilia’s interdisciplinary team and we have tremendous respect and admiration for them as a family.”
During Danilia’s time in the intensive care unit at Holtz Children’s, her mother and father rotated shifts to always have a parent with her. In the span of a few short weeks, she faced infections, septic episodes, intubation, was on an oscillator, and needed dialysis for her kidneys – all situations that limited her chances of transplantation.
Eventually, she was listed on the national transplant list in April 2020.
But shortly after, she became extremely ill. Her chance of survival was less than 72 hours.
“That was difficult to hear,” recalls her father. “I spent the whole night holding her, as I cried, not knowing if she was going to make it.”
On June 16, just when her family began to lose hope, Danilia’s parents received the lifesaving call that a liver was available for their daughter.
“The nurse on shift and I hugged and cried. It was so amazing,” said her mother. “She was prepared for surgery, but we knew she was so sick going into transplant, that there was a chance she wouldn’t survive.”
She was in multi-organ failure before the transplant: her intestines were not working. Still, the MTI team took a chance on her.
Her liver transplant took place the next day, led by UHealth transplant surgeons Rodrigo Vianna, MD, PhD, director, Miami Transplant Institute and chief of liver, intestinal, and multivisceral transplant; Akin Tekin, MD, UHealth’s liver, intestinal and multivisceral surgeon; and Gennaro Selvaggi, MD, FACS, UHealth transplant surgeon.
After the 12-hour surgery, Danilia’s kidneys began to fail. Her family was devastated at the thought of another transplant.
Upon further evaluation, her medical team switched Danilia off her dialysis machine to a smaller machine meant for babies of her size. Though recovery was slow, Danilia got taken off dialysis 12 days before Christmas. The family considered this a “Christmas miracle.”
The recovery was slow, but Danilia’s kidneys began to function perfectly, she began breathing on her own, her nutrition improved, and her neurological development continued to maintain itself.
After 10 long months in the hospital, Danilia was finally ready to go home.
“She’s a miracle who has had to overcome many medical hurdles in her young life,” said
Jayanthi Chandar, MD, UHealth pediatric kidney transplant physician. “Seeing her go home is so heart-warming. Kudos to the parents whose optimism and perseverance played a big role in Danilia’s recovery.”
Upon discharge, 16-month-old Danilia received receive a special surprise visit from Mickey and Minnie Mouse outside of Holtz Children’s – signaling her return to their shared hometown in Orlando.
“She’s our miracle! We often questioned whether we were in the right place and if we were getting the care we needed,” Cotto said. “But today proves we were exactly where we needed to be.”
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