May 10, 2023, 6:52:13 PM CDT May 12, 2023, 4:42:43 PM CDT

Merce’s story: Navigating Hirschsprung's disease in the first weeks of life

Merce had concerning symptoms at just two days old. Children’s Health was there for him and his family.

Little girl smiling at the camera Little girl smiling at the camera

In the summer of 2021, Lindsay and her husband Kevin welcomed their second son, Merce, into their lives. Lindsay's labor was short and "easy." Merce started nursing and the family soon headed home.

Their first hours at home went smoothly. Then, Merce stopped eating. When he began spitting up bile, they called their pediatrician who sent them to the emergency room at Children's Health℠ in Dallas.

"I was terrified. Less than 48 hours after giving birth, there I was pumping [breast milk] in the ER," Lindsay says. "Thankfully, the emergency team at Children's Health was amazing. They quickly ruled out the scary, life-altering scenarios so we knew that Merce wasn't in immediate danger."

They learned Merce was constipated and the team helped relieve him. After he began nursing again, Merce and Lindsay returned home.

A supportive team makes the difference

Someone reading little babies headOver the next few weeks, Merce was eating and growing just like a newborn should. But following another period of severe constipation, his care team at Children's Health tested Merce for a rare condition called Hirschsprung's disease.

Hirschsprung's disease happens when an infant is born without essential nerve cells that help with motility (moving waste through the colon). This can cause difficulty passing stool and create blockages in the intestines.

"We had never heard of Hirschsprung's and we were scared," Lindsay says. "But the entire time, his care team was there for us, giving us crucial information. They were very up-to-date on the research and had lots of experience with the newest, less invasive surgeries. Knowing we were in great hands helped reduce our fears."

The standard treatment for Hirschsprung's disease is a surgery known as a "pull-through" procedure, where a section of the colon with the missing key nerve cells is removed and a normal section of the colon is connected to rectum, allowing an infant to pass stool normally.

After learning that their surgeon, Dai Chung, M.D., is an expert in this procedure, Lindsay and Kevin were reassured and they prepared to move forward with the surgery. Then they hit another roadblock.

"We found out that our health insurance considered having this procedure at Children's Health 'out of network,'" Lindsay says. "Children's team and our pediatrician worked tirelessly with our insurance company to get the procedure pre-authorized, which helped us avoid tens of thousands of dollars in medical expenses. Dr. Chung was directly involved in making this happen. We were beyond grateful for their support."

Compassionate care and expert surgery

The Children's Health team did everything they could to make Lindsay and Kevin feel comfortable. Lindsay recalls Merce's anesthesiologist, who also had a baby similar to Merce's age.

"He said 'I empathize and will treat your son exactly like my own child,'" Lindsay says. "He was so reassuring. I was just in tears, overwhelmed with gratitude in the middle of being scared."

Dr. Chung performed a laparoscopic pull-through procedure, meaning only a small cut in Merce's abdomen was required to complete the surgery. He identified the precise area where Merce was missing nerve cells and successfully removed that section of colon and reconnected the normal part of intestine.

The operation went smoothly, and the family was home a short time later. Soon, Merce was no longer having bowel issues, he was breastfeeding and bouncing around like a happy, healthy newborn.

"Ever since he's been walking, eating, playing with his brother and hitting all of his milestones," Lindsay says. "Dr. Chung told us that if a pediatrician did a rectal exam now, you wouldn't even know he'd had the surgery."

Growing up around the world

Baby smiling before walking through the doorAs long as he stays healthy and continues to grow, Merce will not need follow-up care for his Hirschsprung's. This allows Lindsay and Kevin to make the most of their remote jobs and take advantage of traveling as a family. Merce and his brother are spending their early years experiencing places from the East Coast, to Mexico to Greece.

"Thanks to Children's Health, Merce is a happy, healthy nearly-two-year-old who spends his days racing cars with his brother and testing out new words," Lindsay says. "I'm so grateful for the expert care and support his team provided. Our experience was better than anything we could have expected, and the best that we could have wanted."

Thanks to Children’s Health, Merce is a happy, healthy nearly-two-year-old who spends his days racing cars with his brother and testing out new words.
Lindsay, patient parent

Learn more about our General Surgery Program

The General Surgery Program at Children's Health provides expert care tailored to each child's individual needs. We're home to a team of surgeons with deep expertise in the latest procedures and leading providers to care for all aspects of your child's health. Learn more about our General Surgery program.

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patient story, surgery, general surgery, Hirschsprung’s disease, infant, infant and baby, colon

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