Sofia: A New Beginning

Marisol remembers the first time she held her daughter, Sofia. “I can’t even describe the feeling,” she says. “It was priceless.”

For most parents, this moment occurs immediately after their child’s birth. For Marisol, it took place more than a month later.

That’s because Sofia was born with a congenital diaphragmatic hernia, a defect in the diaphragm that allows abdominal organs to drift upward into the chest, putting pressure on the heart and lungs.

Marisol and her husband, Roberto, learned about the life-threatening complication when she was seven months pregnant. Doctors estimated their daughter’s chance of survival at just 50 percent.

“It was a roller coaster of emotions,” Roberto recalls. “Frustration, fear, and the happiness of anticipating a new addition to the family. Any emotion you can think of, we felt it.”

The couple was referred to UCSF Benioff Children’s Hospital Oakland, ranked best in the Western US for neonatology, where the expert team calmed some of their fears.

“We felt really fortunate sitting down with the team because they made us feel confident,” Marisol says. “It was such a blessing.”

When Sofia was born, her condition was dire. Her lungs didn’t function normally, and she had trouble breathing. The neonatology team immediately sprang into action to intubate her.

“I gave birth, and I was there without a baby in my arms,” Marisol says. “It was really scary. We thought we might lose her.”

For the next few days, Sofia’s life hung in the balance. Following a successful surgery to repair her diaphragm when she was two weeks old, she began to turn a corner. In the end, Sofia would spend the first two months of her life in the hospital, which now feels like a second home to her parents.

“The nurses became like family, and the doctors are amazing – they truly are saving lives,” Marisol says. “We always felt supported and knew our daughter had the best care available to her.”

Today, Sofia is a thriving 1-year-old. At home with her family in Concord, she’s mastered crawling. Her constant smile reveals her first few teeth, which she is happily using to test out new foods because she no longer relies on a feeding tube.

“Knowing how sick she was, sometimes it’s unreal to see how well she is doing now,” Marisol says. “Sometimes I wake up in the middle of the night and just stare at her. We are so thankful and so happy with how she is developing.”