The graduate wore pink.
She was so excited she repeatedly tossed around her mother’s phone in the exam room.
On Jan. 19, 2022, Aurora Hernandez, just shy of 18 months old, became the first graduate of CHOC’s Cardiac GI Nutrition Clinic.
Aurora, who was born with significant heart disease, was the clinic’s first patient when it was established a year ago within CHOC’s Heart Institute.
In what clinic team members say is unique among the nation’s leading pediatric healthcare systems, a gastroenterologist works closely with a nurse practitioner, dietitian, and feeding therapist to determine the best care plan to get babies and toddlers to optimize their weight gain and wean off tube feeding to get them to eat on their own.
Newborn cardiac patients often experience GI or nutritional and feeding issues.
“The team is amazing,” says Aurora’s mother, Latoya. “It’s so helpful they’re all in the same room at the same time. It’s wonderful to be able to have their undivided attention and talk about any concerns I have.”
The Cardiac GI Nutrition Clinic came into being largely because of two associates who joined CHOC around the same time three years ago: dietitian Christina Wright-Yee, MPH, RD, CSP and nurse practitioner Elizabeth Miller, MSN, CPNP.
Christina and Elizabeth see patients at the clinic twice a week every other week along with Dr. Jeffrey Ho, a gastroenterologist and medical director of endoscopy services, and feeding therapist Hema Desai.
Aurora, the first graduate of CHOC’s Cardiac GI Nutrition Clinic
The team treats about 25 kids a month.
“I definitely believe this team is beneficial from both an inpatient and outpatient standpoint,” Dr. Ho says. “Some of these kids need to be watched closely after they’re discharged from the CVICU (cardiovascular intensive care unit) because they struggle to gain weight before and between surgeries and we can help them out. It’s a great service we provide.”
Aurora was born with a complete atrioventricular (AV) canal defect and aortic coarctation – a large hole in her heart affecting all four chambers where they would normally be divided.
Born on July 30, 2020, Aurora has had three heart surgeries – the first when she was 4 months old – and faces more as she grows so the artificial valve in her heart can be dilated.
Her CHOC cardiologist, Dr. Nita Doshi, referred her to the Cardiac GI Nutrition Clinic team when she was around 6 months old – three months after Aurora developed a negative association with food because she would vomit when breastfed or when she took in formula.
Aurora initially was put on a nasogastric (NG) tube, but right before her third surgery in April 2021, she received a gastrostomy tube, or G-tube — one placed through her abdomen so she could receive nutrition directly into her stomach.
By the time Aurora graduated from the clinic last month, she had been off her G-tube feedings for nearly two weeks with the help of the team. She now scarfs down chicken breasts, macaroni and cheese and other favorites.
Christina and Elizabeth not only saw the need for the clinic at CHOC, but they also were inspired to work on getting one up and running because of the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC).
“One of their goals for pediatric hospitals is to increase the access of dietitians and feeding therapists to help promote weight gain and decrease feeding tube dependency in children who have cardiac diseases,” Christina explains.
More than 50 pediatric cardiology care centers in the U.S., including CHOC, are members of NPC-QIC.
“We try to create goals together – it’s a conversation with the parents,” Christina says. “We ask what their goals are for their child, help them set realistic ones and a plan for how we can meet them. Overcoming fears together and providing education and explanations helps a lot.”
Aurora, now 18 months, can enjoy solid foods
Elizabeth says that for parents, watching their child struggle to eat is extremely stressful.
“The parents will often say they feel helpless, and for many of them, it feels like a loss of control,” she says.
Helping parents regain a sense of control is one the benefits of the Cardiac GI Nutrition Clinic, team members say.
“We create a long-term plan for them,” Hema says. “And what’s beneficial about having people from multiple disciplines working together is we’re not looking at patients from different silos, but we’re participating in the same conversations.”
Aurora is a super active child, says her mother.
She loves to play hide-and-seek with her brother, Atreyu, 3, and chase him around the house. She also loves the beach, dancing, dogs, and watching Disney movies.
Parents like Latoya and her husband, Abel, couldn’t be happier with the care she received at the Cardiac GI Nutrition Clinic.
“Our experience at CHOC has been nothing short of amazing,” Latoya says. “The cardiac clinic team has become part of our family. They followed Aurora through her journey and were always ready to quickly return a phone call or email.
“I regularly contacted Christina and Dr. Ho about her diet and GI issues. Both were extremely patient and helpful in helping me come up with the best plan to get my daughter to where she is today.”
For more about CHOC’s Heart Institute