Elizabeth Dillion was born with Hirschsprung’s disease – also known as total aganglionic bowel. Nothing she ate was properly digested. Her parents turned to IU Health and Riley Hospital for Children where she received a multivisceral transplant – five organs.
By IU Health Senior Journalist T.J. Banes, tfender1@iuhealth.org
She sits at a lunch table picking at a slice of pizza but is more interested in a bag of pretzels and a Bernstein Bears puzzle. Elizabeth Dillion’s parents Gary and Heather Dillion aren’t the least bit anxious at their daughter’s lack of interest in lunch.
It’s a new day for this strawberry blonde four-year-old.
The second child of the Dillions, Elizabeth entered the world on Feb. 11, 2015 after what her mom calls an “uneventful pregnancy.” But all that changed shortly after Elizabeth was settled into her Huntertown home, about 10 miles north of Fort Wayne. She was breastfeeding fine but was getting sick more than typical for a newborn. During exploratory surgery at her local hospital specialists discovered she had a severe form of Hirschsprung’s disease (or total aganglionic bowel). In fact, they said they’d never seen such a severe case. Elizabeth’s big brother, Luke was also diagnosed with the disease and underwent a colon resection, with few complications.
“It’s not supposed to be hereditary or genetic but in our case lightening struck twice,” said Heather Dillion.
Fewer than 200,000 cases of Hirschsprung’s disease are reported in the United States annually. The disease is characterized by missing nerve cells in the muscles in part or all of the large intestine. The main symptom in newborns is the failure to have bowel movements. They may also have a swollen belly.
Elizabeth underwent a procedure at her local hospital for placement of a G-tube and central line. She was stabilized and sent home with total parenteral nutrition (TPN) and minimal tube feeding. Soon after, her parents came to Riley Hospital for Children at IU Health where they met with Dr. Charles Vanderpool who specializes in pediatric gastroenterology, hepatology and nutrition, and transplant surgeon Dr. Richard Mangus.
“We learned that in her current condition, Elizabeth would struggle to thrive and remain dependent on the TPN for nutrition, which would be hard on her liver,” said her mother.
Her parents weighed the pros and cons and made the decision that Elizabeth would be listed for transplant. But first she needed to grow – to become stronger.
Ten months later, Elizabeth began pre-testing in preparation for a mulivisceral transplant. In January 2016 – nearly a year after her birth- she was listed for a small and large intestine, liver, stomach and pancreas.
“When it’s an intestinal issue you can do an isolated small bowel procedure, but Dr. Mangus said while the surgery is not as complicated, long term she may not do as well,” said her mother. Also with Elizabeth being TPN dependent 24 hours at day, her liver was failing.
In March of 2016, under the care of Dr. Mangus, Elizabeth received a multivisceral transplant. She was hospitalized for three weeks. By October, her family celebrated Elizabeth’s removal of the feeding tube with a trip to Arby’s.
“One of my favorite things after transplant was getting rid of all the TPN supplies. We could only give her two teaspoons of baby food or 10 CCs of formula or breast milk,” said her mom. Elizabeth has gone through feeding therapy to help develop her eating skills and she’s done well – trying new foods.
In addition to pizza and pretzels, she loves potato chips and pears dipped in ranch dressing.
During a follow up visit at IU Health her parents talked about Elizabeth’s progress since her transplant. She returns every six months for lab work and a general check up. On one visit she raced Dr. Mangus in the hallway to burn off some energy.
It made her parents smile to see their healthy little girl filled with so much life. At home she attends a developmental preschool where she recently was presented with a citizenship award. She is on track to begin Kindergarten next year. She weighs 31 pounds and stands 36 inches tall. She likes to visit the library, play at the park, and watch Harry Potter movies, work puzzles and activity books, and anything that her big brother does – especially Legos and video games.
“She will be on meds the rest of her life but otherwise, she is healthy and thriving,” said her dad. “It’s been amazing here. There aren’t many transplant programs in the country like this one. We have nothing but great things to share about IU Health – everyone – the pharmacists, the child life specialists, the dietitians, and nurses– everyone has brought Elizabeth to where she is today.”