Sonia’s story: Saving hearts a world away

ALL PHOTOS: COURTESY OF THE GEAMBASU/CONOVARU FAMILY

When Sonia Conovaru was born in Romania in 2007 with a number of complex congenital heart defects, she was given a 10 percent chance of living 12 months. Her mom, Oana Geambasu, a young acting student, didn’t know anything about health care, but knew she wasn’t willing to accept that outcome. It was the start of a journey that would take them thousands of miles and forever change the course of their lives.

Traveling to Germany

Sonia’s combination of heart problems was so rare that the doctors in Romania weren’t able to diagnose her, so they referred Sonia to a heart center in Germany. Once there, Sonia was diagnosed with dextrocardia, L-transposition of the great arteries (TGA), pulmonary atresia, a ventricular septal defect (VSD) and an atrial septal defect (ASD).

The German doctors believed they could treat Sonia. They placed a shunt in her heart when she was 3 months old and planned to do a more extensive repair when she was a bit older. But when Oana and Sonia returned for the surgery at 11 months, the doctors found they couldn’t complete the surgery and instead placed another shunt. “They said she would need this type of treatment every year and there was nothing more was possible,” says Oana.

She wasn’t satisfied with this answer.

“I was convinced there had to be another option,” Oana says. “I had heard that Dr. Pedro del Nido, a heart surgeon at Boston Children’s Hospital, was the best of the best, so I decided to send him an email.”

New hope from Boston

Within hours, she received a reply from del Nido. He asked them to travel to Boston for an MRI to see if he could perform a biventricular repair on Sonia. This type of repair allows both ventricles to pump blood from the heart.

Sonia, who was born with transposition of the great arteries, in the hospital with Dr. del Nido
Sonia with del Nido

In September 2008, Sonia and Oana made the journey to Boston, where they met with del Nido and cardiologist Dr. Gerald Marx. The doctors confirmed Sonia was a candidate for biventricular repair and planned to perform the procedure when Sonia was a bit older.

“Sonia’s case was very complex because she had L-transposition of the great arteries, which is quite different than the more typical D-transposition of the great arteries,” says Marx. “This is a particularly rare condition that made surgery much more complicated.”

Filled with a renewed sense of hope, Oana returned to Romania and immediately started raising money for the surgery. When Sonia was 18 months old, her condition began to worsen and Oana knew it was time to make the trip back to Boston.

“They took her into surgery at 7 in the morning and I didn’t see her again until 5 that night,” says Oana. “At that time, the surgery was still experimental, but Dr. del Nido performed magic and fixed her.”

Sonia, who was born with transposition of the great arteries, in the hospital with Dr. Marx
Sonia and Marx

After surgery, the first thing Oana noticed was the color of Sonia’s skin. “For the first time it looked pink. It was so amazing — before then she had always been a little blueish.”

Sonia remained in the hospital for six days, recovering more quickly than expected. The worst behind them, Oana asked for Sonia’s hearing to be tested before leaving the hospital, as she wasn’t yet speaking.

“It turned out she was profoundly deaf from all the medications she had been taking,” says Oana. “We got her cochlear implants, and now she can hear and talk — she’s even learning a bit of English.”

Changing lives in Romania

The experience in Boston was life-changing. Back in Romania, Oana felt driven make a difference in her own country. “Dr. del Nido and Dr. Marx saved Sonia’s life, and I wanted to bring that level of care to the people of Romania,” she says. “Bringing a sick child out of the country shouldn’t be the best solution for their care.”

She began by creating her own non-governmental organization (NGO) to introduce newborn health screenings to the children in Romania, where there had previously been none. She also served under former Health Minister, Vlad Voiculescu, to develop a neonatal hearing screening and to start a national electronic registry of children born in Romania. Last November, she was appointed to work in parliament as an advisor on developing bills and regulation. And just last week, she was appointed personal advisor to the new health minister to help work on a host of health issues in the country.

“It will be an amazing journey and I’m looking forward to continuing to improve the health system here,” she says.

Sonia, who was born with TGA, with her mom, Oana

Oana has also worked tirelessly to help other parents in Romania find appropriate health care for their children, whether it’s supplying them with the names of doctors, helping them fundraise or traveling with them to Munich.

Over the past 11 years, she and Sonia have made many trips back to Boston to check on Sonia’s heart, which continues to exceed all of her doctors’ expectations. Sonia is now an active 11-year-old who dances, rides her scooter and hangs out with friends.

“Dr. Marx has told me that Sonia is one of the best outcomes,” says Oana.

Completing the circle of care

After a surgery and longer visit to Boston in 2016, Oana and Sonia were moved to take on a new project — a major fundraising campaign to improve the intensive care unit (ICU) in Bucharest that once saved Sonia’s life as an infant.

“It was Sonia’s idea and I ran with it,” says Oana. “She wanted to know why the hospital in Romania didn’t look like Boston Children’s. So, we’re raising money to help them rehab the ICU and buy new equipment.” The campaign includes spots on Romanian TV and radio and features Sonia dancing and flying like a superhero above the city, collecting hearts and delivering them to the new hospital.

Sonia, who was born with TGA, at a visit with Dr. Marx and her nurse practitioner

Sonia, who was born with transposition of the great arteries, at a recent visit with Dr. del Nido and his care team
Sonia’s care teams pose with the red felted hearts she made for them

And, on their most recent trip to Boston, Sonia and Oana did deliver hearts to the hospital, presenting all of Sonia’s care team with red felted hearts they had made themselves. Oana sees it as a way of completing the circle.

“Dr. del Nido, Dr. Marx and their entire team saved Sonia’s life, and now, by raising money to improve our own local facilities, she’s returning the favor. In her own way, she’s trying to give other sick children a fighting chance.”

Learn more about the Complex Biventricular Repair Program.