My Heart Belongs to Riley: Sarah's Story
When a mother-to-be goes in for a routine ultrasound halfway through her pregnancy, she never expects to be blindsided by devastating news. At 19 weeks, my husband and I learned that our much-anticipated child was a daughter—a sweet little girl with a complicated condition. She had an omphalocele, which means that some of her organs were outside of her body. Right after Sarah’s birth, we were sent to Riley Hospital for Children where we would learn that she had other worrying challenges.
Sarah had a rare series of conditions called Pentalogy of Cantrell, which means that five areas had serious problems. Only 5.5 out of every million people have this syndrome, and most children don't survive. Thankfully, Sarah's heart was still inside her, making her chances of survival much more positive.
We spent months in the NICU and later in the PICU at Riley. We were always a pivotal part of the team at Riley. Pediatric heart surgeon Mark Turrentine, M.D., repaired her heart defect, and Marcus Schamberger, M.D., oversaw her cardiology care. Charles Leys, M.D., the pediatric surgeon who repaired much of her abdomen, included us and valued our questions and our input. Dr. Leys constructed the cutest belly button for her!
We felt hope at Riley. We were supported, and today, thanks to all of our friends at Riley, Sarah is 4 years old and doing amazingly well! Other than her chest and abdominal scars, you would never know that her life was at risk.
Thank you, Riley Hospital. We are so grateful for the roles you played in saving our Sarah! For other parents like us, I can offer this advice: don't be afraid to ask questions, and don't worry about sounding like you don’t know much. Riley wants you on the team, and working together feels a lot like hope.
Click here to make a contribution to the "My Heart Belongs to Riley" campaign.
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