They could tell by the ultrasound technician’s face: something was wrong with their baby.
After five years of trying to get pregnant, Hope Anderson and Yvette Roybal were finally expecting their first child. During a regular checkup six months into the pregnancy, the normally chatty ultrasound tech went uncharacteristically quiet.
“You could just feel the tension in the room,” Roybal recalled.
A doctor came in and wrote the letters “VSD” on a piece of paper, which the parents-to-be would soon learn stood for “ventricular septal defect.” Their baby had a hole in her heart.
The next three months were a mix of excitement, fear and countless unanswered questions as the couple – and their daughter, Sophia – began a journey that would eventually bring them from their home in Santa Fe, New Mexico, to UCLA Health.
Finding a specialist
After baby Sophia was diagnosed with a congenital heart defect in utero, her moms saw various specialists around Santa Fe and Albuquerque. The experts didn’t agree on a diagnosis, but did warn Anderson and Roybal to prepare for a precarious birth.
“From the time we heard (about the VSD) to the time we delivered was just pins and needles,” Roybal said. “But you still want to be excited, right?”
Sophia was born in Albuquerque on March 13, 2018. Anderson and Roybal knew she would need expert-level care and were willing to look outside New Mexico to find it. Two weeks later, Sophia was being examined by Gary Satou, MD, a pediatric cardiologist with UCLA Health. She was too fragile to fly, so Anderson and Roybal made the 13-hour drive from Santa Fe to Westwood.
Dr. Satou told them Sophia actually had two holes in her heart: a larger one in the bottom chambers and a medium-sized one in the top chambers. They could be repaired, he said, but it would require open-heart surgery before Sophia was 6 months old.
Though congenital heart disease is rare, occurring in just 1% of human births, it’s more common than congenital defects in other organs, Dr. Satou said. VSD is among the most common congenital heart defect.
Even with surgery imminent, arriving in Dr. Satou’s office gave the new parents hope, Roybal said: “It was clear from that moment that this is where we need and want to be.”
Preparing for surgery
The family returned to Santa Fe with one objective: help Sophia gain as much weight as possible. Poor weight gain is a sign of heart failure in infants, Dr. Satou said, and might have required expediting the surgery.
“Dr. Satou said her heart was the size of a grape and they wanted to get it to the size of a walnut before they did the surgery,” Roybal recalled. “You just never forget those things that are said and realize the volatility of it all.”
Sophia’s surgery would be performed by Hillel Laks, MD, former chief of cardiac surgery at UCLA Health and a pioneer in the field. Dr. Laks, who has since retired, would use Sophia’s own tissue to repair the holes, eliminating the need for mesh patches to fix the problem.
With the help of Anderson’s parents, the family drove back to Los Angeles in August of 2018 for the procedure. Sophia’s open-heart surgery took several hours, but went smoothly.
One complication arose during her recovery: Sophia developed a rare condition where her neck would “lock up” and she would get very sick, sometimes vomiting, Anderson said. A pediatric neurosurgeon reassured the moms that the episodes would become less and less frequent with time.
When the new parents brought Sophia home, “I didn’t let her out of my arms,” Anderson said.
Sophia today
Now nearly 7 years old, Sophia is sweet, spunky, sassy, driven and “just awesome,” her moms say.
Roybal runs a car dealership in Santa Fe, and Sophia stars in its commercials.
“She loves acting and performing – that’s her zone,” Roybal said, adding that Sophia’s teachers say she’s an especially empathetic child. When another kid falls down, Sophia is the first one to come help them up.
A beloved big sister to her almost 4-year-old brother, Sidney, Sophia plays soccer and just started doing gymnastics. The episodes with her neck have diminished to less than once a year and usually result in just a brief dizzy spell.
“She’ll live 100 years and she can do whatever she wants to do,” Dr. Satou said of her prognosis. “She could be an Olympian if she wants.”
UCLA Health continues to be a pioneer in congenital heart surgery, he said, and Sophia’s condition is one that has excellent outcomes.
“You would never know she had a heart thing unless she pulls up her shirt and you see the long scar down the middle of her chest,” Dr. Satou said.
“She has the scar, but that’s her superpower,” Roybal added.
Sophia’s parents couldn’t be more grateful they made that 13-hour drive to UCLA Health all those years ago. They return to L.A. annually for Sophia’s checkups with Dr. Satou.
Said Roybal: “We kind of made a joke out of it that Sophia figured out how to go to Disneyland once a year.”
