“Our pediatrician felt a mass in her belly and told us that we needed to go to the emergency room,” Francesca recalled. “She was very concerned.”
The family went straight to the Children’s Memorial Hermann pediatric emergency room at Memorial Hermann Katy Hospital where Rebecca had a CT scan. The affiliated specialists there analyzed the images, but needed additional imaging and testing to get a clearer picture to diagnose the mass, so the family drove Rebecca to Children’s Memorial Hermann Hospital in the Texas Medical Center for more advanced diagnostic imaging.
“All the while, I was thinking it was a tumor, and there were just so many thoughts and emotions going through my head,” Francesca said.
At Children’s Memorial Hermann Hospital, doctors were able to determine that the mass was comprised of stool, and not a tumor. But Francesca’s relief was short-lived.
“It was the size of a baseball and should not have been there, so the next step was to figure out why it was there,” Francesca said.
Rebecca was admitted to the hospital where she received around-the-clock care, including a biopsy and a procedure to remove the mass.
“We had so many different teams come in and talk with us. It was kind of a waiting game for results of all the tests, but everyone at Children’s Memorial Hermann was so great,” Francesca said. “We had a 9-month-old in the hospital and were scared out of our minds, but everyone was so wonderful. The chaplain would come and visit us and offered us so much reassurance, and the Child Life team brought Rebecca all kinds of toys, and those moments really help when you’re scared. It really provided some peace of mind knowing we were surrounded by people who cared and who knew what they were doing.”
After the tests were complete, Rebecca was diagnosed with Hirschsprung disease, which is a condition of the large intestine, or colon, that makes it difficult for a person to pass stool. Hirschsprung disease originates because of missing nerve cells in the muscles of the large intestine. It is present at birth and typically diagnosed shortly after birth.
“Hirschsprung disease is rare,” explained Mary Austin, MD, associate professor of pediatric surgery at McGovern Medical School at UTHealth Houston and a pediatric surgeon affiliated with Children’s Memorial Hermann Hospital, who oversaw Rebecca’s care at Children’s Memorial Hermann Hospital. “We typically diagnose it in newborns, with the primary symptom being lack of a bowel movement within 48 hours after birth. In Rebecca’s case, just a small section of her colon was affected, which is likely why she went undiagnosed for so long.”
Patients with Hirschsprung disease need to undergo specialized surgery, which involves either bypassing or removing the part of the colon with the missing nerves.
“Dr. Austin came in and explained that we needed to have surgery on our baby girl, which was probably one of the harder conversations we had throughout this whole experience, but she did a really good job,” Francesca said. “She was very patient and sat down and drew everything out on a piece of paper for us so that we would understand exactly what was going to happen and why.”
After the surgery, Rebecca needed an ostomy bag for a few months, which collects waste outside the body and allows the colon time to heal before the full reconnection surgery.
That surgery, which completed the repair of her damaged colon, took place on July 12, 2021—Rebecca’s first birthday.
“Once again, the staff at Children’s Memorial Hermann Hospital went above and beyond for her birthday,” Francesca said. “They brought us a box of decorations for her room, they brought her presents—they really made her feel so special. As a parent, you never imagine spending your child’s first birthday at the hospital, but they helped us celebrate even though it was a tough day.”
The surgery was a success, and Rebecca has done remarkably well. But complications can continue to arise even after surgery, including a serious condition called Hirschsprung-associated enterocolitis, which is an infection in the bowel. Unfortunately, Rebecca is susceptible to these infections.
“Dr. Austin and her nurse practitioner were always so responsive, and they personally taught us how to do the irrigation at home when we could,” Francesca said. “It was really so comforting knowing we could reach someone at all hours of the night if Rebecca had a flare-up.”
Although Francesca and Carlos couldn’t be happier with the ongoing follow-up care they were receiving at Children’s Memorial Hermann Hospital in the Texas Medical Center, the nearly one-hour drive to and from the clinic to their house was not always easy to manage. They decided to transfer their care to the Comprehensive Congenital Colorectal Program available at Children’s Memorial Hermann at Memorial Hermann Katy Hospital.
“We started seeing Dr. Hsu in Katy, and she and her team in the colorectal program have been equally as amazing as the team in the TMC,” Francesca said. Danielle Hsu, MD, is an assistant professor in the Department of Pediatric Surgery at UTHealth Houston and a pediatric surgeon affiliated with Children’s Memorial Hermann Hospital.
The Comprehensive Congenital Colorectal Program helps patients who are born with conditions that affect the anatomy or function of the colon, rectum and pelvic floor. Kidney, bladder, genital and spine disorders can occur along with congenital colorectal disorders. In affiliation with McGovern Medical School at UTHealth Houston, physicians from multiple specialties provide care to patients with congenital colorectal disorders and the associated conditions that begin at birth and continue throughout adulthood. Our care team involved in this comprehensive program provide seamless coordination between different medical specialties to deliver the most appropriate treatment options. Surgical and nonsurgical procedures are provided at UT Physicians clinics or a Children’s Memorial Hermann location in the Texas Medical Center. Pediatric surgical procedures are also available at Memorial Hermann Katy.
Rebecca is now two-and-a-half years old, and she requires a small procedure every three months to help maintain her colon’s function.
“Many patients with Hirschsprung disease also have related issues with some muscles not working as they should, which makes going to the bathroom difficult for them,” Dr. Hsu explained. “We treat them by paralyzing those muscles with Botox® until they are old enough and have developed the pelvic floor coordination to be able to compensate”
Because the Botox only lasts approximately three months, most patients will need repeat injections. Dr. Hsu has now performed this procedure on Rebecca twice.
“We love the ease of getting in and out for this procedure—the hospital is easy to navigate and the location is so much more convenient for us,” Francesca said. “The staff is also just amazing. For Rebecca’s last procedure, the doctors let her take in a stuffed animal to the OR for comfort. When she came out of surgery, they had given the stuffed dinosaur a matching bandage on its arm. Rebecca didn’t want to leave that day because she said the doctors were so nice.”
The care and convenience have become even more important than ever for this family, since Francesca recently had another baby—a little boy named Ricardo.
“Rebecca loves being a big sister and we are so happy to be a family of four,” Francesca said. “Our story didn’t go as we had imagined but we are so thankful for everyone who got us to where we are today, and for everyone who has taken such great care of us along the way.”
Learn more about the Comprehensive Congenital Colorectal Program »