Patient spotlight: Nicole Kouri

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Transplant Talk - Boston Children's Hospital Fall 2015

Meet Nicole Kouri, a 14-year-old heart-lung transplant recipient.

Heart Lung Transplant Twins
Nicole, left, and her twin sister Isabella

Nearly six months following a heart-lung transplant, Nicole Kouri makes a triumphant return to school, alongside her twin sister Isabella. It was a pact she made with her dad back in August of 2015, while her friends were lying by the pool, soaking up the final days of summer, and Nicole was lying in a bed at Boston Children’s Hospital.

14-year-old Nicole was born with a ventricular septal defect (VSD) — otherwise known as a hole in the heart — and pulmonary hypertension, a serious condition associated with VSD that makes it difficult for blood to flow properly through the lungs.

Being sick was Nicole’s “normal.”

“I knew I couldn't do much physically, but I’ve always lived life. I was on a basketball team. I did a 5k run and lots of stuff that wasn't easy for me.”

From a very early age, visits to Boston Children’s Hospital from her home in Miami, Florida, were routine — two to three times a year. She was followed and treated by Dr. Mary Mullen, associate director of Boston Children’s Pulmonary Hypertension Program. Although physical activities were not easy for Nicole, she managed to live a relatively normal life, until her condition worsened in April of 2015. Initially, doctors told her she would need a lung transplant but soon decided a heart-lung transplant was the best option.

“I didn’t understand what that meant at the time,” she says. “I was not really processing it in my head. I didn’t realize how bad my condition was, since I was used to pushing myself.”

Heart-lung transplants aren’t very common. There are fewer than 10 pediatric heart-lung transplants performed each year. Nicole’s primary issue was with her lungs, however a year and a half before she was listed, she also was diagnosed with cardiomyopathy.

Typically, doctors would wait to see if the heart regained normal function before recommending transplant, but in Nicole’s case — by only transplanting the lungs — there was a risk she would later need a heart transplant. With organs from two different donors the chance of rejection would be even greater.

Heart Lung Transplant Nicole with bear

A seven-month wait

The difficult decision was made to temporarily relocate Nicole to the Boston area, where her aunt, uncle and grandparents live, so she could be placed on the transplant waiting list in Massachusetts and be close to Boston Children’s.

During that time, a new school year began. Her parents arranged for her to attend eighth grade locally in Lexington, Massachusetts, but when classes commenced, Nicole was in the hospital. An intravenous medication required her to be monitored 24/7.

Her 14th birthday came and went, and still she waited, keeping up with her studies through tutoring.

“Everybody came and we celebrated. The nurses became my friends. They would come in to sit with me and play games and just hang out sometimes. It was comforting, but it was hard knowing all my friends were going out and having fun.”

Heart Lung Transplant Nicole with Dr. Fynn-Thompas
Nicole and her transplant surgeon Dr. Fynn-Thompson

A gift on Christmas Eve

Early in the evening on Dec. 23, 2015, Nicole’s primary cardiologist, Dr. TP Singh stopped by her room. She was wrapping gifts for the nurses.

“He told me they might have a heart and lungs for me,” Nicole recalls. “The nurse started crying and then my dad started crying, but it didn’t hit me until the morning, right before my surgery on Christmas Eve day.”

Performed by Dr. Francis Fynn-Thompson, surgical director of the Boston Children’s Lung, Heart and Heart-Lung Transplant Programs, the transplant went smoothly, and Nicole’s recovery was nothing short of remarkable.

21 days after her surgery, and five months after she was admitted to Boston Children’s, Nicole was discharged from the hospital. Her family and Boston Children’s staff celebrated her return to the real world with balloons, bubbles and photographs.

Heart Lung Nurses Celebrating

Several months passed before Nicole was able to return to Miami but she’s back now and back to school, with eighth-grade graduation within her grasp.

It will mark yet another milestone.

On her Facebook page, which was updated throughout her transplant journey, a final message was written shortly before departing Boston. It is a token of her gratitude to all those who helped her along the way, especially the donor family.

I want to thank the angel donor family so much because they saved my life. I promise them I will live a beautiful, positive, happy life … Life is wonderful. Don't take it for granted. And live like a hero, like an angel by being a donor. Everyone can save a life.

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944

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