Thomas loves birthday parties and chocolate cake. But his life wasn’t always so sweet. He was born with a rare congenital combination known as VACTERL association. His trachea, esophagus and intestine were misaligned, meaning he couldn’t eat by mouth or have proper bowel movements. He needed two surgeries right away and another at 3 months old. He spent another month in our neonatal intensive care unit.
At Children’s National Hospital, Dr. Mikael Petrosyan spent a lot of time explaining Thomas’ unique anatomy to his parents, drawing diagrams to show where things were and where they should be and answering their questions. Reassurance also came from knowing about the collaboration among Thomas’ specialists — in cardiology, nephrology, radiology, plastic surgery, neonatology and pulmonology.
Thomas went home at 4 months old. Over the next year, he had many more hospital visits and procedures with Dr. Petrosyan. Dr. Gary Rogers, a plastic surgeon, reconstructed Thomas’ thumb due to an abnormality related to his congenital disorder.
Thomas is now 4 and a big brother. “Thanks to Children’s National, we have a happy, healthy Thomas who is enthusiastic about life and can eat by mouth, which wasn’t always possible,” his mother Suzanne says. “We also have a team of specialists who consider his VACTERL to be a ‘normal’ condition, which is an extraordinary comfort.”
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