Juan Emilio Pont-Romero – Hirschsprung’s Disease

Juan Emilio Pont-Romero

In Search of a Colon Expert

It wasn’t long after Carolina and Alejandro Pont-Romero had their first and only son, Juan Emilio, that they noticed something wasn’t right. He had trouble having bowel movements and didn’t have an appetite.

The family, from Corrientes, Argentina, saw doctors who diagnosed Juan Emilio with Hirschsprung’s disease when he was only seven days old.

Hirschsprung’s is a congenital condition. It occurs in about one in every 5,000 births and causes the large intestine to stop doing its normal functions.

Lack of mobility can hinder emptying the bowels of fecal matter, which can cause serious problems in the large intestine.

But, Carolina counts her son lucky.

“Hirschsprung’s can affect the entire large intestine. Juan Emilio only had the condition in the rectosigmoid, which is a segment of his intestine.”

Being a new parent is tough enough. But Carolina and Alejandro felt a tremendous amount of added stress knowing their son had a rare condition. And there were very few people who could truly know what they were going through.

It was clear that Juan Emilio would need surgery to correct the issue. Like any parent, Carolina wanted the best for her baby.

“If someone who isn’t an expert does the surgery, it can go terribly wrong and the colon can lose its function. It needs to be done by experts only,” she said.

They started researching and learned about Luis De la Torre, MD, of the Colorectal Center at UPMC Children’s Hospital of Pittsburgh. They got in touch with Dr. De la Torre and spoke with him in their native language, Spanish.

They knew Dr. De la Torre was a renowned expert and going to Pittsburgh would be the best option for their son.

“It was a tough decision, but we knew it was the right one,” Carolina said.

While they prepared for the surgery, Dr. De la Torre helped them maintain Juan Emilio’s health with support by phone and email.

A Strong Support System

Six months after Juan Emilio was born, the family packed up and flew from Argentina to Pittsburgh.

“We arrived in winter, and I remember it being so cold,” Carolina laughs.

In January 2017, at six months old, Juan Emilio underwent the operation.

While it’s an intense procedure, Carolina said, “we weren’t worried because we knew Juan Emilio was in good hands.”

During the six-hour surgery, Dr. De la Torre removed the diseased section of the colon.

“Everything went fantastically,” Carolina said. “We were so thankful. De La Torre was more than our doctor. He was like a second father to Juan Emilio.”

Three days after the surgery, Juan Emilio was already up and eating, and no complications arose. The family spent five months at the Ronald McDonald house while Juan Emilio recovered.

“For what was a difficult time for our family, there was so much support. We're grateful for the support from Dr. De la Torre, his entire team, and the International Services Department,” Carolina says.

A doctor herself, Carolina read lots about the genetic condition and asked questions of the team.

“We always had contact with the department and the team. We never felt abandoned,” she said. “Luckily, we didn’t have any problems, but we knew they were there for anything.”

Brighter Days Ahead for Juan Emilio

Today, Juan Emilio is a healthy and happy 2-year-old. Thanks to Dr. De la Torre, he's stayed in good health.

“Dr. De La Torre saved us in all the ways that someone can. He is my hero,” says Carolina.

“Now, Juan Emilio is such a happy boy, and we are happy too,” she says. “Thanks to Children’s, we’ve turned in to such a happy family. We are infinitely thankful.”

Contact UPMC Children’s Hospital of Pittsburgh

If you live outside the U.S., contact our International Services team to seek a consult or refer a patient to Children’s.

Contact the Colorectal Center for Children for an appointment or consult.

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