While on a long visit with family in Brazil, Fernanda and Lucas received devastating news from local doctors. Their baby would be born with a severe heart defect and the care he needed to survive was 4,000 miles away—back home in Boston.
Prenatal imaging showed that the left side of Sebastian’s heart was critically underdeveloped—a sign of a rare, life-threatening condition called hypoplastic left heart syndrome (HLHS). Babies with HLHS require a series of three complex reconstructive surgeries in their first years of life or a transplant, which is not possible if an infant donor cannot be found in time.
The family flew home and found the expertise Sebastian needed at Boston Children’s. Treatment for HLHS was revolutionized at the hospital in 1979 when Dr. William Norwood performed a groundbreaking surgery that remains the critical first stage of care for children with HLHS.
At just 5 days old, Sebastian underwent the Norwood Procedure to create a new pathway for blood to flow through his heart. Fernanda and Lucas appreciated interpreters who translated medical terms and nurses who guided them through the specialized care Sebastian would need to grow before his next surgery.
He went home when he was 35 days old. Two days later, as Fernanda was changing his diaper, Sebastian's heart stopped.
She performed CPR and saved his life! She knew exactly what to do, thanks to training from the hospital’s Home Monitoring Program.
Over the following months, Sebastian was often hospitalized. He struggled to feed and his heart stopped once more before he was revived. At 5 months old, after his second surgery to improve blood flow to his lungs, he suffered a stroke.
But Sebastian kept fighting.
As he recovered, his joyful personality shone through. He loved music therapy and lit up when his big sister visited, and nurses came by to see how he'd grown. The kindness and community the family found at the hospital helped them stay hopeful.
It takes a large team—inside and outside the hospital—to support a baby with complex needs.
Sebastian’s mom, Fernanda
Before he turned 7 months old, Sebastian was strong enough to go home again.
The family recently celebrated his first birthday. Sebastian continues to receive coordinated, complex care at Boston Children’s to prepare for his third, and hopefully, final surgery before age 4.
Fernanda and Lucas are deeply grateful for the outstanding treatment Sebastian has received and services that helped them stay strong on their journey. “I also had great support from my sister," explains Fernanda. "But it takes a large team—inside and outside the hospital—to support a baby with complex needs.”
Thanks to his loving family, compassionate care and innovative breakthroughs at Boston Children’s, brave kids like Sebastian can look forward to healthy futures.
