The beautiful story of our son Tomas

Tomas, who had a biventricular repair for his complex heart disease, stands in the road near his home

When I became pregnant in 2014, we were excited to become parents again, and I dreamed about my beautiful son, Tomas. It was a perfect pregnancy, I felt him grow in my belly, and his ultrasound and checkups were all perfect.

Then, in my sixth month of pregnancy, we went for a 5-D ultrasound at a center in Cordoba, Argentina. At that ultrasound, Tomas was diagnosed with several congenital heart conditions, including heterotaxy, a single ventricle heart, dextrocardia, transposition of the great arteries and pulmonary atresia. They told us if Tomas did not have immediate medical care, he would die once he was born. It was shocking and very devastating news for us. At that time, we asked the doctor what the best place in the world was to treat this complex condition. His response was, without hesitation, Boston Children’s Hospital.

Tomas was born on January 15, 2015 and he had his first heart surgery just four days later. Within 15 days he was discharged, but we were told Tomas would need more surgeries to survive. That was when we had our first contact via mail and telephone with Suemei Portugues, global patient access manager at Boston Children’s. She performed her work with responsibility and dedication, which we will never forget. For several weeks, we exchanged all kinds of information.

Tomas, who had a biventricular repair for his complex heart disease, poses with his family at a national park in Argentina

When Tomas was 7 months old, he had a second surgery in Argentina. Soon after this, we received communication from Boston telling us there was another possibility of treatment for Tomas, a biventricular repair. It was a very difficult postoperative period, but Tomas was finally discharged. At that time, we visited some of the most renowned cardiac surgeons in Argentina. They all insisted it was best for Tomas to continue with the traditional single ventricle surgery rather than a biventricular repair.

When we returned home, we asked for a telephone consultation with Dr. Pedro del Nido, chief of Cardiac Surgery at Boston Children’s, to talk about a biventricular repair. We had many doubts, fears and uncertainty about the repair, but Dr. del Nido spoke with us for 40 minutes, clearing up all our doubts. He explained the biventricular repair would offer Tomas a good quality of life, the same as any other child his age.

When Tomas was a year old, we traveled to Boston to meet Dr. del Nido and his wonderful, caring and professional team to have all the necessary studies to confirm Tomas was a candidate for biventricular repair. Once the studies were finished, we received the wonderful news that Tomas could move forward with the biventricular repair. They told us the repair would be performed in two stages, and the first should be done in the next six months.

Tomas, who had a biventricular repair for his complex heart disease, poses with his father and Dr. Pedro del Nido
Tomas, with his dad, left, and Dr. del Nido

Six months later, we returned to Boston for the first operation. The surgery took more than nine hours. They were very difficult hours for us as parents, as well as for all of our family and friends in Argentina, but we received lots of support from his excellent team. Tomas stayed in the hospital for two months after his surgery, receiving personalized and constant care. As parents, we were especially grateful to Cecilia Matos, program coordinator of the Hale Family Center for Families, who provided us with support and guidance during our entire stay in Boston.

Tomas and his mom, with Cecilia Matos, left

Once we returned home, the team at Boston Children’s were communicative, professional and compassionate while we waited to have his next surgery. They always offered us their unconditional support.

We returned to Boston in January 2017 for the second stage of Tomas’s biventricular surgery. Once again, he received wonderful attention from his whole medical team and recovered under the care of his nurses, who spoiled him and cared for him as if he were their own son. After two months, we returned to Argentina and Tomas continued recovering at home.

Tomas, who had complex BIV surgery, blows out birthday candles with his dad.

In 2018 Tomas started preschool. He is just another happy kid in the class —  playing, jumping, having fun and living a normal life with his heart repaired like new.

Thank you, Boston Children’s, for saving Tomas’s life and offering him the same quality of life as any other child his age.

Translated from Spanish by Esterlina MacInnes.

Learn more about our Complex Biventricular Repair Program.