Experts From Cedars-Sinai Guerin Children’s Search for Answer and a Cure
The Dhillon family seemed to be living the California dream, enjoying the waterway just steps from their home on Naples Island. But a little more than five years ago, when their daughter, Daya, began feeling ill, the Dhillon family’s California dream morphed into a medical nightmare.
Daya was around 7 years old when she started feeling tired and lethargic. Her mother, Diljit, said Daya’s tiredness would come and go, but it was so extreme, they sought medical help.
“We started our medical journey with blood work and found she was very low on hemoglobin, and that was our first indication that she was losing blood,” Dhillon said.
Over the course of the next few years, Daya underwent four colonoscopies and endoscopies, swallowed pill cameras and had numerous imaging scans as doctors tried to find the source of the internal bleeding.
As Daya’s condition worsened, she became too tired to go to school or engage in any of her favorite water sports. And one day, her parents found her unconscious on the bathroom floor and rushed her to the nearest hospital emergency room.
Physicians were stumped, and with no other likely diagnosis, they suggested putting Daya on steroids on the chance it could be Crohn’s disease. But the Dhillons weren’t ready to give up.
“It didn’t feel right to treat her based on a default diagnosis,” Daya’s father, Avtar, said. “With all the testing that was done, we still didn't know where the bleeding was coming from and why it was coming.”
That’s when they came to Cedars-Sinai and to pediatric gastroenterologist Shervin Rabizadeh, MD, MBA, chair of Pediatrics at Cedars-Sinai and associate director of Cedars-Sinai Guerin Children’s. After a thorough exam, Rabizadeh recommended one more endoscopy with Quin Liu, MD, a unique specialist within Guerin Children’s who does advanced endoscopies for children.
“We were told Dr. Liu is able to scope into places and see things that others can’t,” Diljit Dhillon said. “We were willing to give it one more try.”
Liu and Rabizadeh suspected a Meckel’s diverticulum, the most common congenital defect of the gastrointestinal track. Essentially an abnormal outpouching of the small intestine, Meckel’s diverticulum affects up to 3% of the general population and represents a common cause of bleeding in children.
“From all the previous tests and scans, it appears doctors were looking for a Meckel’s but didn’t find it, in part because of its location,” Liu said.
One of the reasons a Meckel’s was suspected was that Daya was losing so much blood that she needed transfusions, a hallmark of the condition. The difficulty was in finding the source of the bleeding.
“We have these specialized scopes and specialized cameras that allow us to go deep into the small intestines, whether from the top or bottom,” Liu said. “I knew that the likelihood of me finding something was toward the bottom part or the bottom half of her small intestine. We prepared her for the endoscopy going from basically the common colon pathway to the small intestine, where we were able to reach the Meckel.”
The Meckel’s diverticulum that had been harming Daya all those years and causing her internal bleeding, was abnormally large, and needed to be surgically removed. Liu was able to inject the area with a dark dye so it would be easier for a surgeon to find.
Eugene Kim, MD, chief of Pediatric Surgery at Cedars-Sinai Guerin Children’s, was called in to operate. “We had to cut that portion of intestine out and then sew the two ends together,” Kim said.
The surgery was a success and Kim says Daya has an excellent prognosis for a full recovery. “It’s great to finally be able to find the root cause of a problem that slowly sapped blood and energy from this young girl and see her and her family get their lives back,” Kim said.
Now, mere weeks after her surgery, Daya is back to her old self. Her family is planning for a full school schedule, and in Daya’s free time, she’s enjoying spending time on the water with her dad.
“It’s been transformative,” said Diljit Dhillon. “She’s back in sports, she’s on the water, she’s taking the Jet Ski out into the ocean with her dad, and the look on her face—she’s happy. We’re grateful that after all we’ve been through, ultimately, there was somebody that was able to help our daughter, and we’re so thankful for that.”