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.”

For pictures, interviews, and b-roll, visit https://bit.ly/3ooHa4M

Nicole Hannah-Edgecomb was 24 weeks pregnant with her second child when she went to see her obstetrician for a checkup. An ultrasound had already revealed that her baby had fluid around the heart. Four weeks later, another ultrasound showed a large mass was now covering the baby’s heart.

“At that point, my doctor realized the severity of my baby’s case,” Nicole said. “I was sent to another hospital to receive treatment, but that hospital, too, couldn’t handle my case. I was told my only hope was Jackson Memorial Hospital.”

At 29 weeks, Nicole was transferred to Jackson Memorial Hospital, where she began receiving care from Salih Yasin, MD, UHealth – University of Miami Health System obstetrician/gynecologist, who specializes in high-risk pregnancies and the delivery of multiple babies.

Two weeks later, a multidisciplinary team of UHealth doctors and Jackson nurses prepared for a complex surgery to save the baby at Holtz Children’s Hospital at the University of Miami/Jackson Memorial Medical Center. On February 23, doctors performed a Cesarean section and delivered Symphony Harmony Edgecomb, a four-pound, four-ounce baby girl.

Immediately following the delivery, and in the same operating room, Eliot Rosenkranz, MD, a UHealth pediatric cardiac surgeon at Holtz Children’s, and his team performed an ex utero intrapartum treatment, also call an EXIT procedure, in which they opened the baby’s chest while she was still attached to her mother’s placenta.

The placenta provided Symphony with oxygenated blood from her mother, while doctors removed the fluid around her heart. They also removed the plum-size teratoma, or tumor, covering the heart, and immediately placed a tracheostomy tube to help her breathe. The tumor was crushing both of her lungs, which would have made survival outside the womb impossible.

Immediately following the two-hour surgery, Symphony was moved to Holtz Children’s pediatric intensive care unit. After one week there, she was transferred to the hospital’s neonatal intensive care unit (NICU), where she received care for four months.

“It was somewhat traumatizing. She’s so precious,” Nicole said. “I never thought I could get through something like this. I am so thankful for these doctors for everything they did.”

Nicole and her husband, Steven Edgecomb, say their faith and support from family and friends kept them strong.

“This child is a miracle baby. She is so special. She’s here for a reason,” Steven said. “These doctors worked around the clock. They treated her like it was their child they were trying to save. We appreciate that.”

After four months in the NICU at Holtz Children’s, Symphony went home on just in time for Father’s Day. Her parents were so excited to bring her home and introduce her to her big brother, 18-month-old Jeremiah.

“We wanted everyone to know about Symphony’s case, especially other parents going through the same thing,” Steven said. “Our child could have died in the womb. If you have a special case, a special need, Jackson is the place to go.”

In February 2014, Ivanna Cardenas Gutierrez was excited to learn that she was going to be a mom. When she and her husband, David Gutierrez, went to the doctor to confirm her pregnancy, they received an unexpected surprise.

“The doctor said we were having twins – and I was shocked,” David Gutierrez said. “Then, he said there were three babies. Two minutes later, he said there was a fourth. I was speechless.”

The couple conceived quadruplets naturally, an extremely rare occurrence that happens in just 1 in 700,000 pregnancies. Approximately 90 percent of quadruplets are conceived with the assistance of medical technology.

Ivanna, 27, turned to Salih Yasin, M.D., a University of Miami/Jackson obstetrician/gynecologist who specializes in high-risk pregnancies and the delivery of multiples, to care for her throughout the pregnancy.

The pregnancy was going smoothly and Ivanna was feeling great when she went in for her 27 week check-up. But tests revealed that one of the babies was not getting enough nutrients and was at risk of dying. A decision was made to deliver all of the babies that day, August 18, 2014 – three months earlier than their November 15 due date.

A multidisciplinary team of specialists, including doctors to care for Ivanna, and neonatologists to care for the newborns, staffed the operating room at Jackson Memorial Hospital for the emergency Cesarean section. In less than two minutes, Dr. Yasin delivered three boys and one girl—Julian, Sebastian, Gabriel, and Francesca. Julian, the largest, weighed 2 pounds, 3 ounces, while Gabriel, the smallest, weighed 1 pound, 3 ounces.

The babies were under the care of a team of neonatologists at the Schatzi Kassal Project: New Born Neonatal Intensive Care Unit (NICU) at Holtz Children’s Hospital, where they continued to grow and get stronger until they all came home.

“There have been a lot of ups and downs, but we have gotten through it,” Ivanna said. “We know how blessed we are.”

When 6-year-old Victoria Bermudez came down with a low-grade fever, her mother, Judith Ferrer, did what most parents would: gave her Tylenol and Motrin. Over the next few days, Victoria’s fever persisted and she developed a mild cough.

When Judith noticed Victoria was breathing heavily, she took her to an urgent care center, where she tested positive for influenza and strep. While there, Victoria’s breathing got even worse. The doctor called 911 and Victoria was immediately rushed to a nearby emergency room. Over the next four hours, Victoria – a charismatic kindergartner who was previously healthy with no medical history – went into cardiac arrest three times. She was moved into intensive care, where her body went into septic shock, negatively impacting all of the organs in her body.

Victoria’s only chance at survival, her parents were told, was for her to receive extracorporeal membrane oxygenation, a treatment commonly referred to as ECMO, in which a machine takes over the work of the lungs and the heart to allow those organs time to rest and recover. With few hospitals able to offer this advanced and complicated ECMO treatment, Victoria’s parents decided they wanted her moved to Holtz Children’s Hospital at the University of Miami/Jackson Memorial Medical Center.

“She was perfectly healthy and from one day to the next became so critically ill that many doctors didn’t think she would live,” Judith said. “But our main priority was to get her on ECMO quickly and keep her alive.”

The pediatric transport team from Holtz Children’s – a team composed of physicians, nurses and respiratory technicians specially trained to care for the sickest patients in need of safe and rapid transportation to the hospital – picked up Victoria at the hospital where she was being treated and brought her straight to the pediatric intensive care unit at Holtz Children’s.

Doctors examined Victoria and reiterated to her parents just how dire the situation was. Within hours, Victoria was placed on ECMO, one of only a handful of children and premature babies who receive the treatment each year at Holtz Children’s.

Victoria remained on ECMO for 17 days, intubated and sedated during the treatment. Doctors encountered many obstacles along the way, including severe blood loss that required multiple transfusions and an ischemic foot, in which a lack of adequate arterial blood flow from the heart to the foot cuts off circulation. Victoria’s right foot was so severely damaged that it turned black and risked amputation, but the team of medical professionals at Holtz Children’s – pediatric critical care physicians, surgeons, and highly skilled intensive care nurses – were able to prevent that from happening.

For nearly two months, Victoria remained in the pediatric intensive care unit at Holtz, recovering from the trauma her body underwent. She required the help of a ventilator to breathe and a feeding tube for nutrition. Bed-ridden for so long, Victoria also needed daily physical, speech and occupational therapy at Jackson Rehabilitation Hospital to help her walk, regain her strength, feed herself, and talk.

As Victoria was discharged home, doctors said she would make a full recovery.

Judith—who never once left the hospital during Victoria’s illness—credits the medical team from Holtz Children’s with her daughter’s miraculous recovery.

“The medical care at Holtz has been out of this world,” she said. “This is the only place you want to be if something goes wrong – and in life there is always a chance that something might go wrong.”

In March 2014, the Richani family was vacationing in Miami from their native Venezuela when then 4-year-old Salma had trouble walking and complained of severe back pain. Her parents, Dr. Kaled Richani and Elizabeth Richani, brought her to the emergency room at Holtz Children’s Hospital at the University of Miami/Jackson Memorial Medical Center.

After several tests, they received the worst news of their lives: Salma had neuroblastoma, a rare type of cancer that affects the nervous system in young children.

“As a family we felt vulnerable, lost, and horrified that our little princess was in danger,” said Salma’s father, Kaled. “The news was devastating because of the uncertainty of not knowing what would be her future.”

Since then, Salma has courageously battled the disease – undergoing dozens of hospitalizations, multiple rounds of chemotherapy, and a stem cell transplant at Holtz Children’s. Through it all, she’s always remained in great spirits with a positive outlook.

“At Jackson, we discovered a home. Salma’s physicians became our friends, but our greatest strength came from the nurses who always had patience and affection when treating our daughter,” Kaled said. “They gave us that peace of mind we sought.”

Throughout Salma’s treatment, her family was always by her side. Her father would wake her up every morning with music, something that always made her smile.

Salma’s parents recorded a video of their daughter singing and dancing to her favorite song, “Volví a Nacer” – “I am reborn” – by Colombian superstar, Carlos Vives. The video went viral and was shared by thousands on the Internet. It even caught the attention of Vives. The singer visited Salma at Holtz Children’s and invited her to attend one of his concerts, in which she was astounded when he asked her on stage to sing with him.

Salma captivated the hearts of all those who crossed her path. She also received countless messages through social media using the hashtag, #Love4Salma.

As Salma completed her last round of treatment, her parents planned a surprise flash mob to greet her as soon as she left the hospital. Nearly 100 people participated, including members of the local community, Salma’s caregivers from Holtz Children’s, her family, and friends.

“I wanted to show her with this token of love that she would not return to the hospital to sleep, that there were no more immunotherapies, transplant operations, everything was over,” Kaled said. “Coming to the end of her hospitalization was a great victory.”

Click here to watch video footage from the flash mob event.