Gianna Paniagua's Story
At 29 years of age, Gianna is one of the longest-living infant heart transplant recipients in the country.
Gianna Paniagua: The Art of Medicine
It has been said that the practice of medicine is an art—based on science. Gianna Paniagua’s pathway to medicine and art are closely intertwined. At the age of 29, Gianna is one of the longest-living infant heart transplant recipients in the country, an established artist, and a postbaccalaureate premedical student with aspirations to become a cardiologist.
Gianna was born in New York City in 1991. At birth, doctors heard a heart murmur that they told her mom to keep an eye on. At one year of age, Gianna’s mom noticed her daughter was not learning to crawl or walk, and seemed to be having greyouts—a precursor to fainting that is caused by low brain oxygen levels. The pediatrician thought an ear infection, but mother’s intuition knew something was not right.
Gianna’s mom sought the advice of a cardiologist who suggested going to the new pediatric heart program at NewYork-Presbyterian Morgan Stanley Children’s Hospital—advice that would ultimately save her daughter’s life. Gianna had her first appointment at NewYork-Presbyterian in August 1992 and left the hospital a few months later with a new heart.
Gianna’s New Heart
Experience is the Difference: NewYork-Presbyterian Hospital has performed more pediatric heart transplants than all other New York hospitals combined.
The care team, led by Linda Addonizio, MD, who began the Pediatric Cardiac Transplant Program in 1984 and has remained the Director of the Pediatric Cardiomyopathy, Heart Failure, and Transplantation Program at NewYork-Presbyterian all these years later, diagnosed Gianna with severe hypertrophic cardiomyopathy (HCM)—a thickening of the heart muscle that makes it difficult for the heart to pump blood and can be life-threatening.
“Dr. Addonizio immediately began discussing transplant as an option because I was in severe heart failure,” says Gianna who was put on the national waitlist for a heart transplant. While on the waitlist, Gianna’s little body went into cardiac arrest for 90 minutes. She would have been pronounced dead, but doctors kept pumping manually, revived her, and put her into a medically-induced coma. Gianna moved to No. 1 on the transplant waitlist. Soon thereafter, Dr. Addonizio came in to tell Gianna’s mom the good news.
“Not only did they secure a heart, but the match could not be more perfect. Everyone in the room cried tears of happiness,” says Gianna as she retells the story that her mom told her of the day that she got a new heart. On October 23, 1992 Dr. Addonizio’s surgical team performed a life-saving heart transplant on 14-month-old Gianna. The surgery was a success and for 18 years Gianna continued to receive routine, pediatric heart transplant follow-up care.
The Art of Medicine
Spending much of her childhood at the hospital, Gianna grew close to Dr. Addonizio and the other doctors, nurses, and staff members who cared for her. Transplant patients become very attached to their cardiac care teams and Gianna was no exception. It was here that her interest in medicine and art was sparked.
“I grew up in the hospital under Dr. Addonizio. The team is very special—like family and a second home for me. Nobody made me feel abnormal or different. Because it felt natural for me to be in the hospital, I have wanted to be a doctor since I was 3-years-old,” says Gianna who is currently enrolled in Columbia University’s postbaccalaureate premedical program.
As a child, Gianna spent a lot of time doing art therapy in the Child Life Program at NewYork-Presbyterian Morgan Stanley Children’s Hospital. “My first paper cutting sculpture was from a Child Life teacher who cut it out of a Post-it Note and hung it on my IV pole. I credit him with inspiring me to become an artist,” says Gianna who used art to help cope with the stress of undergoing a heart transplant at a young age.
After majoring in art in college, Gianna went on to become a full-time artist specializing in largescale papercutting sculpture. Now she wants to pay it forward by collaborating with NewYork-Presbyterian’s Child Life Service to give art therapy back to other children and adolescents who are undergoing transplantation. She is especially interested in compliance issues in adolescent patients. “When I was a teenager, I once stopped taking my medications. Now as an adult, I can use my creativity and artistic background to help other patients.”
There is no doubt that Gianna’s career as an artist and her personal experience with heart transplant will inform her path to medicine. Medical schools across the country are incorporating the visual arts to help medical students sharpen their observational skills and teach them to be more empathetic with patients. Gianna’s artwork combines her two passions—art and medicine. She is frequently invited to lecture and teach at both art and medical institutions around the country ( www.giannapaniagua.com; @giannapapercutting ). In 2014, she received the Grand Prize award for the VSA Emerging Young Artist Program in association with The Kennedy Center, which honors artists with disabilities, and was given the opportunity to exhibit in the Smithsonian in Washington D.C.
“At 14 months old, I received a heart transplant from [NewYork-Presbyterian Morgan Stanley Children’s Hospital] and have been able to keep that same organ ever since. I've had no other issues except for chronic rejection. I want to get as involved with the transplant community as I can. Half of my life is dedicated to transplant.”
We performed the first successful pediatric heart transplant
At the age of 19 years, Gianna experienced her first organ rejection—a process that occurs when the immune system recognizes the transplanted organ as different and tries to attack and eliminate it. To avoid organ rejection, transplant recipients must take lifelong immunosuppression medications. Studies show that medication adherence can be especially difficult during the adolescent years. As a teenager, Gianna once decided to stop taking her immunosuppression medication which likely led to a cascade of events that triggered her first organ rejection.
Now at 29 years of age, Gianna has experienced multiple episodes—each of which requires a brief hospital stay—and is considered to have chronic organ rejection. She is constantly aware of the possibility of organ rejection and works to educate young transplant recipients on the importance of medication adherence.
The transition of care from pediatrics to adult, and the transfer of care to another institution can be an extremely vulnerable period for a congenital heart patient or a heart transplant patient. Despite transitioning her care from pediatrics to adult and moving across the country to continue her art education, Gianna’s ties to NewYork-Presbyterian’s Heart Transplant Program have always remained strong. This was especially true when Gianna was experiencing organ rejection during her transition from pediatrics to adult care.
“NewYork-Presbyterian has one of the strongest Transition and Transplant Life programs. Having received care at so many hospitals, I often see a disconnect between clinical care and research. The difference in Transition care at NewYork-Presbyterian and other centers is that my team here kept looking, digging, and searching when I knew that something was not right—even when my biopsy came back perfect in terms of acute rejection.”
Over 550 Infants and Children received new hearts at our hospital. Call us to learn more – 212-305-6575.
Gianna cites the collaborative doctor and patient relationship she has with the pediatric and adult heart transplant teams including Dr. Addonizio and Maryjane Anna Farr, MD, Medical Director of Adult Heart Transplantation at NewYork-Presbyterian/Columbia, as the primary reason for her successful transition. “Both Drs. Addonizio and Farr listen to me as a patient, take my opinion into account, and take a collaborative approach. They are always very caring and answer all of my questions about my care, even when I receive care at other centers.”
Gianna experienced chronic organ rejection in Pennsylvania during the COVID-19 pandemic. Even though she was hospitalized at another medical center, her team at NewYork-Presbyterian collaborated from afar—helping to make treatment decisions, discuss appropriate COVID-19 precautions, and balance her school needs.
“Columbia University has always been my dream school. Because my biopsies are difficult, Dr Farr takes into account my exam schedule. I moved from my hospital room directly into my apartment in New York City,” says Gianna who is currently attending the postbaccalaureate premedical program. She sometimes takes the long way to class for a visit. “Drs. Addonizio and Farr are always excited to see me and chat. I have met other patients who have this relationship as well.”