Saving Baby Nathaniel: As the Nation Went Into Lockdown Mount Sinai’s Liver Transplant Team Went Into Overdrive

Image of jaundiced 6-month-old Nathaniel in hospital prior to transplant

Prior to his transplant surgery, Nathaniel Capelo was severely jaundiced. He required continuous blood transfusions and his belly had to be drained of fluid every other day.

On March 18, 2020, the anguished parents of 6-month-old Nathaniel Capelo sat in his hospital room at The Mount Sinai Hospital facing the grim reality that he would die within days if he did not receive a new liver. One week earlier, the COVID-19 pandemic had begun to grip the nation and widespread lockdowns were taking place. But at 10:30 that night, the couple received a phone call from Mount Sinai’s transplant team that offered tiny Nathaniel a potential lifeline: the family of a shooting victim in his early 20s, who had just died in another state, were willing to donate his liver—epitomizing the “good news/bad news” world of organ transplants.

At the time, operating rooms throughout New York City were being converted into intensive care units to house severely ill patients with COVID-19 who were beginning to strain the city’s health care system, and many hospitals had started suspending their transplant procedures altogether. The hospital where the donor had died told Mount Sinai’s Recanati/Miller Transplantation Institute that its surgeon Chiara Rocha, MD, and her team would have to bring their own personal protective equipment to wear while extracting and retrieving the donated liver to bring back to New York. Charter airline companies were shutting down flights and Mount Sinai’s administrators worked their magic in securing a Learjet to fly Dr. Rocha and her team hundreds of miles to and from the donor hospital in the middle of the night.

“The stars lined up,” says Sander S. Florman, MD, Director of the Recanati/Miller Transplantation Institute. “This was as logistically complicated as anything we have ever done and in a child where everything was stacked against him.”

To this day, Nathaniel’s doctors do not know what caused his rapid liver failure. But now, the inquisitive 20-month-old toddler “is going to do great,” says Dr. Florman. Three-quarters of the liver he received was transplanted into an adult patient at Mount Sinai, who is also doing well.

Members of Mount Sinai’s Liver Transplant team include, from left: Antonios Arvelakis, MD, Associate Professor of Surgery; Marcelo E. Facciuto, MD; Sander S. Florman, MD; and Chiara Rocha, MD.

The liver is the only organ in the body that can regenerate and grow. “But what most people don’t know is that if the liver is too big for the body it can shrink down,” says Dr. Florman. This is significant because at the time of his transplant surgery Nathaniel weighed only 11 pounds, representing “the extreme technical complexity” of what was possible, he adds.

Most children requiring a transplant would receive 20 percent of an adult liver—a size much too large for Nathaniel. Before the transplant could take place, Marcelo E. Facciuto, MD, Professor of Surgery at the Icahn School of Medicine at Mount Sinai, had to cut the donor liver down to the “smallest anatomic segment” possible, says Dr. Florman. But even that was too big. Following the seven-hour surgery led by Dr. Florman, the team left Nathaniel’s abdomen open for four days in order to shrink the liver to a size that was able to fit inside his tiny body.

After conducting more than 4,500 transplants during its 32-year history, Mount Sinai’s program has encountered a challenging surgery like Nathaniel’s only a dozen or so times, says Dr. Florman. “You’re talking about sewing an artery that’s just a couple of millimeters with sutures that are as fine as your hair. You are connecting the artery, the veins, and the bile duct, and it is all done with what we call a loop—glasses with a built-in microscope lens because it’s too small to complete with just your eyes.”

He adds, “Transplant is the epitome of a team sport and you can’t do this without having a tremendous team or without an institution that has unbelievable depth. Only a small number of transplant centers in the country would have been willing to take on a child this small. Even in the best of times this would have been a great triumph and a great case. This was even more so considering the time in which it happened.”

In fact, March 2020 marked the busiest month ever for Mount Sinai’s liver transplant program, which conducted 23 transplants, some of which were referrals from other programs that had just shut their doors.

Image of health 20-month-old Nathaniel among his toys

Today, at 20-months of age, Nathaniel is on track to hit all of his milestones. He is walking on his own, beginning to talk, and able to eat tiny pieces of solid food.

Nathaniel recently celebrated the one-year anniversary of his life-saving surgery, and his prognosis is good. Each month that goes by lowers the chances that his body will reject his transplanted liver. He has been weaned off of all but one of his 13 medications.

“Dr. Florman and his team were just amazing,” says Nathaniel’s father, Dennis Capelo. He and Nathaniel’s mother, Alexandra Ramos, remained at the hospital with their child during the five-month ordeal. Nothing could have prepared them for “the scariest time we ever had to deal with,” says Mr. Capelo, who has a 3-year-old son and 10-year-old daughter from a prior relationship.

He says, “We try to cherish every moment we have. We spend as much time as possible with all of the kids and each other and hope for the best.” He and Ms. Ramos have remained close to Nathaniel’s former Mount Sinai nurses and send them photos and videos to mark their toddler’s milestones, including his first steps. “They became like family to us,” Mr. Capelo says.

One of Nathaniel’s physicians, Ronen Arnon, MD, Professor of Pediatrics, Hepatology, and Liver Transplantation at the Icahn School of Medicine at Mount Sinai, remembers how “Nathaniel struggled to survive. The first months of his life were spent in a hospital bed rather than at home, and his first friends were his doctors and nurses. He suffered from eating and breathing difficulties and he could barely move due to his swollen abdomen.”

Another of his physicians was John Bucuvalas, MD, Chief of Pediatric Hepatology, Professor of Pediatrics, and Director of Solid Organ Transplant Outreach, Jack and Lucy Clark Department of Pediatrics, and Mount Sinai Kravis Children’s Hospital. “Today, Nathaniel is an active toddler and exploring his world. He won’t remember the transplant,” Dr. Bucuvalas says. “But for his parents, the Intensive Care Unit, P5 (Pediatric floor 5) teams, and the liver team, the series of events are etched in our memory and remind us of why we do what we do.”

Organ Transplant Team Offers “HOPE” to Patients

Jose Velez, seated, with, from left, transplant team members Sander S. Florman, MD; Shirish S. Huprikar, MD, Chief Medical Offi cer, The Mount Sinai Hospital; Vikram Wadhera, MBBS, Assistant Professor of Surgery (Kidney/Pancreas Transplantation); Brandy Haydel, Clinical Research Program Director; and Meenakshi M. Rana, MD, Assistant Professor of Medicine (Infectious Diseases).

In June, Jose Velez became the 50th person at the Mount Sinai Health System’s Recanati/Miller Transplantation Institute to receive a transplant under the HIV Organ Policy Equity (HOPE) Act, which allows organs from HIV-positive donors to be transplanted into HIV-positive recipients with end-stage disease, thus increasing the organ donor pool. Prior to the HOPE Act, which went into effect in late 2015, all patients—those with and without HIV—were required to use organs from HIV-uninfected donors.

During the nine years that Mr. Velez waited for a kidney transplant, he was notified four times that a kidney might be available only to be told that it had gone to someone else on the waiting list. “I would tell anyone who is eligible to be in the HOPE program that they should do it,” he says.

Before surgery, he was dependent on dialysis several times a week and could not travel freely or participate in activities that conflicted with such a constricted schedule. Now Mr. Velez’s plans include buying season tickets to the opera and traveling to Abu Dhabi, London, and Paris. “It’s a whole new world, a very different life than I was living for nine years,” he says. “I’m open to so many things now.” He credits Mount Sinai for providing a “safe, secure, and caring” environment. “Sometimes they make you feel as though you’re their only patient,” he says.

Mount Sinai was the first hospital in New York State and the second in the nation to perform a HOPE transplant in 2016. Today, Mount Sinai performs more of these transplants than any other U.S. hospital.

“Thanks to tremendous advances in antiviral therapies, patients with HIV now live long lives and may suffer from end-stage liver and kidney diseases that can be treated by transplantation,” says Sander S. Florman, MD, Director of the Recanati/Miller Transplantation Institute at The Mount Sinai Hospital. “Carefully selected people with HIV can have comparable outcomes with transplantation as people without HIV and deserve an equitable opportunity to get a transplant. This has increased the availability of organs for these patients, and has allowed people with HIV to be donors and offer the gift of life to others.”

First He Donated His Bone Marrow, Then He Gave Her a Kidney: How Two Strangers Became ‘Family Forever’

When Jeramy Davies was a senior at Texas Tech University in 2010, he helped organize a charity drive for Be the Match®, the national program that matches potential donors to those needing a bone marrow transplant. Little did he know that five years later he would donate his own bone marrow to a stranger in New Jersey— Kelly Ribeiro, who was being treated for lymphoma. And in 2018, he would give Ms. Ribeiro one of his kidneys, effectively saving her life twice.

Since hospital protocol forbids the exchange of any information between donor and recipient for one year, and then only if both parties agree, Mr. Davies and Ms. Ribeiro remained unknown to each other immediately following her successful bone marrow transplant. In 2016, Mr. Davies reached out to her and they began exchanging emails and text messages and speaking frequently by phone.

But over time, they both faced significant challenges. Ms. Ribeiro was dealing with kidney failure due to her previous condition. During a bout with pneumonia she fell into a coma. When she emerged, she began dialysis three times a week. “I never felt so sick and depleted as I did with kidney failure,” she says. “Every day, I could feel the life draining out of me.”

At the same time, Mr. Davies was helping his wife batt le a brain tumor that would take her life in July 2017. “Kelly was great moral support for me,” Mr. Davies recalls. “She understood everything we were going through, and she was a huge source of strength.”

But Ms. Ribeiro did not want to burden him with her own struggle, and even as her kidney function dwindled to 19 percent, she did not ask for his help. Only after her mother told Mr. Davies how sick she was did he understand the full extent of Ms. Ribeiro’s situation. Immediately, he offered Ms. Ribeiro his kidney. Immediately, she turned him down.

“It didn’t feel right,” she says. But he persisted, and in late December 2018, she underwent a successful kidney transplant at The Mount Sinai Hospital. Since Ms. Ribeiro now had Mr. Davies’ immune cells and even his blood type from the earlier bone marrow transplant, they were a 100 percent match. This also meant she would require fewer antirejection medications.

“It’s the most satisfying thing I’ve ever done,” says Mr. Davies, 38. For her part, Ms. Ribeiro says, “I never met anyone so selfless. He really acted like it was no big deal. But he saved my life twice. He is my guardian angel, and he is now family forever.”

Ms. Ribeiro’s surgeon, Vikram Wadhera, MBBS, Assistant Professor, Surgery, says, “The surgery for both patients went extremely well but, for most of us involved, it was the human and emotional aspects of this case that touched us deeply.”

Says donor surgeon Edward Chin, MD, Professor of Surgery, and Director of the Living Kidney Donor Program at the Mount Sinai Health System: “This is such a compelling story. It was such an altruistic thing for Jeramy to do. It reminds us that there’s so much good in the world.”

This winter, Ms. Ribeiro has been regaining her strength and looking forward to jump-starting her life, which had been on hold for the past six years. She expects to complete her master’s degree in Library and Information Science from Rutgers University later this year. Mr. Davies, who now lives in Denver, says he is close to getting back to his routine. He is looking forward to snowboarding and training for a triathlon later this year.

Living donation is the shortest route to organ transplantation and often results in a closer match and better outcome for the recipient. The Zweig Family Center for Living Donation at Mount Sinai is one of the largest living donor programs in the United States.

It Takes a Team–Reflections from a Post-Transplant Coordinator

Guest post by Sara Geatrakas, RN

As a post-kidney/pancreas-transplant coordinator I have been charged with helping patients thrive after transplant surgery. Healthcare providers can provide all the best medical advice, make all the proper medication adjustments and order all the newest and fanciest tests, but staying strong and healthy after a kidney transplant requires a dedicated and hard-working team, which doesn’t stop at Mount Sinai’s Recanati/Miller Transplant Institute (RMTI). Patients and their families are the most important, vibrant and vital part of this process. (more…)

Patient Story: Donating My Kidney

Guest post by Cathy Bavaro, living kidney donor.

It was just about a year ago now when I heard my brother Joey say the words, “My doctor is putting me on the Kidney Transplant List.” It was on of the scariest things I had ever heard. What was even scarier to me was the possibility that I may not be a match to give my brother a kidney. All I knew in my heart was if I was lucky enough to be a match, I would be giving my brother my kidney so that this nightmare could be over. (more…)

A Letter to My Kidney Donor’s Family

Guest post by Sharyn Kreitzer, MSW, Director of Outreach for the Recanati/Miller Transplantation Institute and Greta Deerson, LMSW, Kidney Transplant Social Worker. 

Organ donation recipients are encouraged, through their transplant centers, to contact donor families (even though they do so anonymously) to say thank you. The Donor Family Services team from LiveOnNY acts as an intermediary to determine when both the donor and the recipient are ready to reveal identifying information and they often assist in coordinating a meeting when both donor and recipient are ready. (more…)

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