PROVIDENCE, R.I. (WPRI) — Sliding and swinging on a sunny day at India Point Park in Providence, Paige Alston is enjoying just being a kid, but she’s spent much more time at the hospital across the water in her young life, than at the playground.
“They said this big word that we believe your child is developing an omphalocele,” Paige’s mom Amber recalls, the memory still fresh in her mind.
It was a big word and an even bigger shock to Amber and her husband Cliff when they went for an ultrasound. The excitement of having their first child suddenly turned to paralyzing fear.
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They’d soon learn what that big word – omphalocele – meant. It’s an abdominal wall defect which caused Paige’s stomach, intestines and a portion of her liver to develop in a sac outside of her body.
After Paige was born, doctors discovered another birth defect – a hole in the wall between the two upper chambers of her heart called an atrial septal defect. On top of that, she also had congenital lung disease.
Paige spent the first six months of her life in the hospital.
“We’ve seen the worst of the worst,” said Amber. “We’ve seen her code in front of us and we’ve seen her have CPR performed on her.”
At just three months old, Paige underwent open-heart surgery and a tracheostomy to help her breathe. Amber said it was about three weeks before they could even hold Paige for the first time. Thirteen surgeries later, they finally got to go home.
Paige has had 11 more surgeries since then. Because she’s been sedated so many times and has had a breathing tube for so long, her development has been slower than your average child, but Amber and Cliff are blown away by her progress.
“One day they’re at their absolute worst, and a day or two later in some cases, she’s having the best day ever,” said Cliff. “They’re so resilient.”
Paige still faces an uphill battle, she’s recovering right now from an abdominal surgery – her 24th procedure – and eventually, she will have her trach removed.
But the fearless preschooler takes it all in stride.
“It’s funny because we drive by the hospital and she goes ‘that’s my hospital!’ said Amber, “and we’re like yup, and she’s like ‘hi kids!’ Even the procedures we go through now, it does not phase her. She walks those halls like she owns the place.”
Now, she’s representing the place. Hasbro Children’s Hospital named Paige the 2018 Children’s Miracle Network Hospitals’ Rhode Island Champion.
Paige’s parents have made it their mission to spread awareness about omphalocele and World Omphalocele Awareness Day, marked by black and white or cow print. Those colors represent MOO, or Moms of Omphalocele.