Grace’s story: Beating the odds after multiple surgeries to treat rare genetic disorder

Grace’s story: 

Photo courtesy of Michelle Rogers

When Michelle was pregnant with Grace, concerns developed early in her pregnancy. Grace wasn’t reaching certain fetal markers – she couldn’t suck her thumb or swallow.  So, at 37-weeks, Michelle’s physicians decided to deliver Grace via C-section.

To establish a diagnosis, Texas Children’s Hospital’s Dr. Minifee and team performed a laparotomy on Jan. 16, 2012. A biopsy confirmed 3 day old Grace had Hirschsprung disease. It’s when a baby’s intestinal nerve cells in the colon are missing. This causes intestinal obstruction and deadly infections, like sepsis.

Today, 9-year-old Grace is doing very well. She is a 3rd grader who loves to eat and has a huge palate. Since her last surgery, she no longer needs a colostomy bag. 

Without the support Grace received within the first few hours of life, she wouldn’t have survived with this GI condition. We are creating and saving a lives with the resources Texas Children’s offers in improving patient care and outcomes.”



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