Our Stories

Davi’s heart defect was discovered right after he was born, and he had his first heart surgery when he was just 1 day old. To look at him now, you would never know this about him. He is happiest when he’s near horses, motorcycles and playing ball.

His complex heart defect required a series of a few surgeries that were performed by Dr. Ulisses Croti and his team at Hospital da Criança e Maternidade, our partner hospital in São José do Rio Preto, Brazil.

Recovery from open heart surgery is challenging. As he grew, Davi needed more time than other children to learn to sit, walk and talk. But now, his life is no different from the life of any other child.

“Being by his side is wonderful,” says his mother Sandra.

Mohamed was born with a relatively rare, complex heart defect that required a complex surgery. His full heart repair was possible because of our training partnerships. He is now an active toddler. Like other children his age, he is busy playing, and he has a healthy appetite. 

His surgeon, Dr. Raju Vijayakumar (Vijay) at G. Kuppusamy Naidu Memorial Hospital in Coimbatore, India, received guidance in this complex operation from Children’s HeartLink medical volunteer Dr. Christopher Baird, a surgeon from Boston Children’s Hospital.

Read The Girl Who Waited 12 Years to Have Her Heart Repaired about a girl named Mythili who had the same heart defect, which was corrected the same week.

After training with Dr. Baird, Dr. Vijay can now perform this relatively rare, complex operation on his own.

For years Mythili was so tired that she couldn’t go to school or even walk. Her heart problems were first detected at during a regular check-up at preschool. Her parents took her to various doctors and hospitals where the answer was always the same. They told them that surgery for her would be very high risk because her heart defect was too complex. 

Then in 2019, Mythili’s pediatrician referred her to Dr. Raju Vijayakumar (Dr. Vijay) at G. Kuppusamy Naidu Memorial Hospital, our partner hospital in Coimbatore, India. Children’s HeartLink medical volunteer Dr. Christopher Baird from Boston Children’s Hospital was in Coimbatore for a training exchange focused on complex surgeries. This presented the ideal opportunity for Mythili. Dr. Vijay operated on Mythili’s heart, with Dr. Baird standing beside him and guiding him. 

After training with Dr. Baird, Dr. Vijay can now perform this relatively rare, complex operation on his own.

Mythili’s parents are happy that Mythili can now focus on her studies. As for Mythili, she wants to learn tailoring. Dr. Vijay hopes that she will go on to study nursing, then come and join his cardiac team.

If she had been born a few years earlier, Phuc would not have received the surgery that saved her life. Her cardiologist and namesake, Dr. Phuc, along with the entire medical team, received training from a Children’s HeartLink partnership that made it possible for them to deliver high-quality care for little Phuc’s complex condition when she was 2 years old.

Now Phuc is an active, loving school girl who loves to draw and play with her friends. She goes to school, where her favorite class is intensive English, and spends weekends playing with her neighborhood friends. She makes her mother proud by insisting on putting money into charity boxes whenever she sees them, evidence that she has a good heart like her mother always hoped for her. None of this seemed possible before her lifesaving surgery, but now Phuc is clearly thriving.

This gifted and ambitious young man was small and perpetually fatigued when he was young. He couldn’t keep up with his friends and classmates, and he sometimes fell asleep in class. At age 6 Qirong was diagnosed with a heart defect. He had corrective surgery a year later at our partner hospital in Lanzhou, China, a two-hour bus ride from his family’s village. Qirong has a vivid memory of bowing to the surgeon immediately before the operation.

“I never imagined that I would one day go away to university and then go on to graduate school in materials chemistry and mineralogy in Germany,” says Qirong. “I can run and play sports, and still have the energy to study hard. Without heart surgery I wouldn’t have this life.”

Olivia was born with a heart defect. Her older brother was also born with a complex heart condition, and sadly died months after a complex operation. When Olivia’s parents discovered their daughter would need surgery soon after she was born, they sought help at our partner hospital in São José do Rio Preto. The team there agreed that although it would be a challenge, they would try to help Olivia.

The day after Olivia was born, she underwent the first of two operations needed to treat her heart defect. Her recovery was a struggle. She had to overcome many obstacles to get better. A few months later, Olivia came back to the hospital for her second operation, also successful. Her surgeon Dr. Ulisses Croti pronounced Olivia officially “safe and sound,” with a normal, healthy life ahead of her.

Bruna Cury, RN, MSN, is a nurse educator at Children’s HeartLink partner hospital Hospital de Criança e Maternidade in São José do Rio Preto, Brazil. She has a passion for children and recognizes how critical nurses are to the recovery and care of young heart patients. Although her fellow nurses have a strong desire to provide high-quality care, they have limited opportunities in Brazil and don’t always receive the specialized training and education they need. “Working beside people who show us how and why to do things that help our patients is empowering and inspiring for our whole team. Our work has gotten so much better as a result of training with the Mayo Clinic and observing their amazing culture of respect and teamwork. None of these improvements would have happened if Children’s HeartLink hadn’t believe in us and created this important partnership.” In her role as nurse educator, Bruna helps other nurses feel empowered enough to make a difference in the lives of their patients: “I hope I can inspire other nurses by being a role model.”

Christy, a charge nurse, has been working at G. Kuppusamy Naidu Memorial Hospital (GKNM) in Coimbatore, India, for over 25 years. For the last few years she and her fellow nurses have received training provided by Children’s HeartLink: “We nurses have been trained well, but we have to keep our knowledge current and be on track. After surgery, it is the nurse who plays a key role in caring for young heart patients, when twists and turns can happen.”

The partnership with Children’s HeartLink training with medical volunteer teams from Mayo Clinic and Boston Children’s Hospital focuses mainly on the care given after surgery by intensive care nurses and respiratory therapists.

“When medical volunteers came to train us, our confidence level increased about how to manage a high-risk group of children who are critically ill. Before we thought: ‘With this child, we will not be able to manage, we are helpless.’ Then they came and helped us, which has made a lot of difference.”

“After surgery, it is the nurse who plays a key role when twists and turns can happen. We play a proud role of being a nurse. We need more training. We have been trained well, but we have to keep our knowledge current and be on track”.

When Dr. Krishna Kumar helped establish a cardiac program in Kochi, India, there were 150 patients already waiting outside before the hospital had officially opened its doors. It was the first hospital of its kind in southern India. Needless to say, he and his team had to get moving quickly because there were so many patients in need of care. Today, the Amrita Institute of Cardiac Sciences (AIMS) wins awards for their standards of care. And as a Children’s HeartLink Center of Excellence, the team at AIMS trains other cardiac teams in the region.

Although Dr. Kumar credits Children’s HeartLink with being a catalyst, the program at AIMS would not have become the program it is today without his leadership. His visionary leadership and passion for helping those in need has made all the difference for countless children and their families who now have access to quality care for heart disease.

Dr. Joseph Dearani, cardiac surgery chair at Mayo Clinic, has been a Children’s HeartLink medical volunteer for over 20 years. The babies he helped operate on two decades ago are now adults, studying, working and leading active lives. Dr. Dearani is committed to tackling the worldwide problem of congenital heart disease and considers it a gift to be able to help those who haven’t had the same opportunities he has: “This work is exceedingly fulfilling. It’s a win-win for the patients and families who need the care, for the medical practitioners who provide it and for the hospital environment they work in.” Along with continuing to lead medical volunteer teams on training visits, Dr. Dearani also serves as a medical director on our board.

Anna Fisk is a senior leadership nurse in the cardiac intensive care unit at Boston Children’s Hospital. She has over 30 years of pediatric cardiac intensive care nursing experience, providing expert care to critically ill patients and their families. And she has been Children’s HeartLink’s volunteer for over 7 years, providing training to nurses in India and Southeast Asia.

“Being a medical volunteer becomes very personal, one-on-one with a nurse, but you’re also doing a huge global thing. Often, if you’re a good bedside nurse, you don’t think ‘How am I going to change the world?’ But you interact with one person, two people, a unit of six or 20 nurses, and you make a global impact. That is an amazing thing.”

“At Boston Children’s I work in a cardiac unit that’s busy and big, and we do many complex things. But when you learn more about your peers around the world and see their challenges, you take those things back home and say: ‘Hmm, maybe I could do this a little differently.’ As a medical volunteer, you learn much more beyond your own experience and viewpoint.”

Dr. Mark Lewin is chief in the Division of Cardiology at Seattle Children’s and medical director on the Children’s HeartLink Board of Directors and also a medical volunteer.

“Children’s HeartLink has the right goals in mind. They’re not swooping in to do simply operate and perform other procedures and then leave with nothing left behind. Instead, their objective, one that I deeply believe in and I think resonates with other volunteers and donors, is that we will seek to identify and understand opportunities for improvement — whether clinical, educational or administrative. We then embark upon strategic planning with the cardiac team, the hospital, and sometimes, the city and the state. And then we try to attack these issues from different angles so that we leave the team and program with a meaningful and sustainable solution.

It takes several encounters just to develop the all-important relationship building which paves the way to shared understanding that will allow suggestions to be accepted. And in the end, we identify how best to hand off the renewed program to the hospital to continue the work independently.”

Jeff Paurus is a nurse educator who has been training nurses with Children’s HeartLink for 20 years. During his teaching trips, he has donated countless hours of his time to educating nurses and nursing students. He has made 36 trips to China alone! Now he volunteers with our Nurse Residency Program in Kochi, India, the only program of its kind in the country. This program trains the nurses who work with families during home visits before and after their child has heart surgery. In addition, Jeff has been working to improve hospital screening in India for newborns with possible congenital heart disease.

“I think that one of the problems in many countries is that there’s very little support to foster further development with nursing. Our hope is that the prestige of nursing will increase, with both the educational programs we provide and the recognition they receive.”

“Children’s HeartLink values the role of nursing at their partner hospitals. They make great efforts to improve postoperative care for children in the ICU and the step-down floor. The nurse’s role doesn’t end in the operating room.”