Cal Tackles Hirschsprung’s Disease with the Help of His Care Team

Sam and Kristen Conro knew something was wrong with their newborn within the first 48 hours of life. His belly was distended, he wasn’t eating, and he was sleeping more than they expected a newborn would. Baby Cal had not had a bowel movement since he was born. Sam and Kristen took Cal to their local hospital in the far Northwest suburbs of Chicago a few times before being referred to Lurie Children’s.

“I was an ICU nurse, but I worked with adults so I didn’t know much about pediatrics,” Kristen said. “But I knew enough to know that something wasn’t right.”

A couple of ambulance transfers took the Conros from Barrington to Chicago. By the time they arrived at Lurie Children’s, they were tired, worried, and scared about what was to come.

At Lurie Children’s, pediatric surgeon Erin Rowell, MD, diagnosed Cal with Hirschsprung disease, a disease in which the colon is missing “ganglion cells”—the cells in the bowel wall that help control bowel movements. The part of the intestine that is missing the “ganglion cells” has to be surgically removed, with a “pull through” surgery. Some children have a small segment of large intestine that has to be removed, and some have a long segment.  Dr. Rowell notes, “This disease affects the very basic functions of eating and stooling, which makes it so challenging for new parents, especially in the infant and toddler years.”

“Dr. Rowell told us Cal would need surgery,” Sam said. “We weren’t excited for that, but at the same time, being at Lurie Children’s gave us a huge sense of relief. Finally we had an idea of what’s going on and met someone who says they can fix it.”

“The diagnosis was still scary,” Kristen added. “But it was sort of a blessing in disguise. It was a big surgery, but Hirschsprung brought us to Lurie Children’s and to Dr. Rowell, who has been an absolute angel.”

Two months after his original diagnosis, Cal had surgery to remove the abnormal part of his colon. His recovery was rough; it included a respiratory infection and a bout of enterocolitis (inflammation of the small and large intestines typically caused by infection), but this time also stood out very positively for the Conros.

“Everyone on Cal’s team was fantastic. They reacted quickly and were so on the ball,” Kristen said. “You could tell they were really caring for our whole family.”

Today, Cal is 4 years old, has a normal life, and only needs to come to Lurie Children’s twice a year for check-ups.

“As a nurse, it was terrifying to be on the other side of this type of situation,” Kristen said. “But I think the experience has made me better at my job. I can empathize. It’s helped me to help others.”

The Conros attribute Cal’s recovery to so many people, but especially to Dr. Rowell. They described the surgeon as “a godsend.”

“That’s my favorite part about my job,” Dr. Rowell said. “Knowing that these families are going through something so hard, and then watching them come out the other side.” Thanks to Dr. Rowell, Cal will grow up completely free of Hirschsprung related complications. “We really need a partnership between the family and the surgical team. Working together with parents like the Conros makes the child’s care and recovery so much better.”

“Coming to Lurie Children’s was the best decision we’ve ever made,” Sam and Kristen agreed. “Obviously we wouldn’t choose to re-do this, but if we had to, we wouldn’t re-do it any other way.”

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