Six-year-old Caroline Gopal loves ballet shoes and tutus as much as equations and experiments. Her mom, Amanda, says Caroline hopes to be a scientist one day.
“Curiosity is part of her charm,” Amanda says. “She loves asking questions about the world and understanding how things work. One day she asked me where tissues come from and we had to look up the process together.”
No matter what Caroline decides to be when she grows up, she will be ready because she has already overcome more challenges in the last three years than most kids will face in a lifetime.
Experts in Tummy Troubles
Caroline was 3 years old when Amanda started to work with her on transitioning from diapers to potty training. As is a natural part of the process with some kids, Caroline developed a fear of pooping in the toilet. So she held her bowel movements for long periods of time, causing her to be constipated.
“She was in so much pain, she would rock back and forth and curl up on the floor,” Amanda says.
Then came a stomach bug. Since Caroline was constipated for so long, the sudden sickness shut down her colon completely.
“Her stomach was distended and huge,” Amanda says. “We took her to see her local pediatrician to hopefully get some answers. Based on the results of an X-ray, they sent her to our local hospital near Asheville for further treatment.”
The hospital gave Caroline medication to flush out her system, but Amanda says it only partially resolved the problem.
“We later realized that Caroline’s colon was too big and distended at that point,” Amanda says. “She never pooped normally after that.”
Caroline’s parents recognized that she wasn’t getting much relief, so they started seeking out options for more advanced specialists in North Carolina. Luckily, they connected with Atrium Health Levine Children’s Hospital, a Best Children’s Hospital for gastroenterology & GI surgery according to U.S. News & World Report.
“We loved that Levine Children’s had leading-edge treatment options and it wasn't too far from home.”
Caroline’s diagnosis didn’t come easily. But the team of board-certified pediatric gastroenterologists were dedicated to helping her feel better. Caroline was in the hospital for multiple months and countless tests, one of which being a motility test ordered by Dr. Jason Dranove, Caroline’s pediatric gastroenterologist. The test would evaluate how Caroline’s colon was functioning and contracting. While the results weren’t what Caroline’s parents expected, they finally had an answer.
Caroline was diagnosed with colonic pseudo-obstruction, a rare condition that essentially means Caroline’s colon acts like it’s obstructed, even though there is no blockage.
Although Caroline’s family was relieved to have an explanation for what had been causing so much pain and distress, they were worried about what this diagnosis meant for their daughter’s well-being.
“It was nice to have a name for it and to be at a facility where people had the knowledge and resources to help her. But there isn’t a lot of data around it,” Amanda says. “It’s a rare disease and there’s not much research or many treatment options.”
To help treat the condition, Caroline’s care team recommended she have an ileostomy. The procedure creates an opening in the abdomen to connect the ileum (the lower end of the small intestine) to the abdominal wall and out of the body.
Given the invasive nature of this procedure, Caroline’s parents wanted to explore other options before putting Caroline through this process.
“Dr. Dranove was so patient and really walked through all of the possible treatment plans,” Amanda says. “He was very thorough, and he never pushed or pressured us to proceed with the surgery. We knew he would only do for Caroline what he would recommend for his own children.”
Amanda says they tried a variety of testing and procedures, but realized Caroline’s body was being put through a lot.
“These tests were awful to get through, and we realized this wasn’t the life we wanted for her,” Amanda says. “That helped us see that the best choice for her was the ileostomy.”
Throughout the course of her treatment, Amanda says they felt like they could talk with Dranove about everything.
“He has been so open with us,” Amanda says. “We talk a lot about poop and digestion, which can be such uncomfortable topics. But he helped us embrace that this is our life. He helped us find humor in the things that are difficult and he always finds little ways to make Caroline feel more at ease.”
Once Caroline had the ileostomy surgery in March 2020, Dranove said the best course of action was to let it do its job and give her colon a rest.
Life-changing Care Restores Confidence for the Future
Two years later, Caroline had the dysfunctional part of her colon removed and an appendicostomy was placed. This surgery created a channel through the abdominal wall into the colon, allowing a flush (or enema) to be given at the beginning of the colon instead of through the rectum.
In July 2022, the team reversed Caroline’s ileostomy, so she wouldn’t have to use a bag on the outside of her body to eliminate waste.
Amanda says the change in Caroline since her treatment at Levine Children’s began has been a night-and-day difference.
“Before the first surgery, she had no energy and was losing weight,” Amanda says. “She would just lay on the couch. It was awful to watch. But once they did the ileostomy, her system started working and moving things through.”
Today, Amanda helps Caroline manage her digestive system through her appendicostomy and flushes it out every night with saline and medicine to help her colon contract.
Caroline has some limitations and adaptations to her diet, but Amanda says she is able to do so many things she wasn't able to do before, like eat blueberries and popcorn and take her first year of ballet class.
“Having her ileostomy bag removed was a big turning point for her,” Amanda says. “Now she has more confidence and feels like a regular kid at school again!”
Caroline has check-ins at Levine Children’s about every three months to ensure she is on track with her treatment. It’s been eight months since Caroline has had to stay in the hospital, which is the longest stint they have had since Caroline was initially admitted to Levine Children’s.
“It has been so traumatic for us as parents to watch her go through this and be in so much pain and discomfort,” Amanda says. “But the entire care team at Levine Children’s showed us so much empathy and supported us as her parents. Driving from Asheville to Charlotte was the best decision we made for her and our family and we would 100% recommend it to anyone who may be in a similar situation.”
Rise and thrive
The goal for Caroline is that her system will start to move and function on its own. As her parents continue to navigate what is best for Caroline in the long run, Amanda says they hope she can use this experience to help her do hard things in the future.
“We want her to feel brave and courageous,” Amanda says. “To be able to look at all the things she has overcome and know she can get through whatever challenges lie ahead in her life.”
As she continues to ask questions about the world around her, Caroline’s care team will be by her side to help her dream big and dance her heart out.
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