Six-year-old Clara Hawkins was a preemie who would not have survived without the support of her Riley GI, nutrition and surgery team.
By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org
Lauren Hawkins can still remember celebrating when her daughter would eat one tiny Goldfish cracker.
It was a big deal for a little girl who couldn’t or wouldn’t eat much of anything by mouth.
“And now she’s probably my best eater,” the Pendleton mom of three said of her youngest child, Clara, now 6.
Oral aversion is a real thing – that fear of allowing food or anything to touch the mouth. And in this case, it likely was brought on by Clara Hawkins’ complicated medical history, which involved multiple abdominal surgeries, intubation, a feeding tube and specially blended formula just to keep her alive.
Dr. Charles Vanderpool, pediatric gastroenterologist and medical director of Nutrition Support and Intestinal Rehabilitation for Riley Children’s Health, has been on Clara’s team since the early days when she was born 14 weeks premature.
He and the clinical nutrition team continue to see her for follow-up care to track her growth and development after a shaky start.
Born in November 2016, she was transferred to the neonatal intensive care unit at Riley Hospital for Children, where she remained until the following May.
Lauren and her husband, Troy, didn’t know if their daughter would survive. She was hit with multiple complications, the most serious of which was NEC – necrotizing enterocolitis.
The condition, which primarily affects premature babies, inflames intestinal tissue, causing it to die. Clara had a section of her intestines removed at just 10 days old, leaving her with “short gut syndrome,” where the body is unable to absorb enough nutrients from foods because there is not enough small intestine.
Clara’s prognosis was relatively good after that operation, but she developed complications several weeks later that required more surgery.
She went home with a central line for TPN (total parenteral nutrition), as well as an NG (nasogastric) tube.
“We were doing IV nutrition through the central line and feeding her through the NG as well,” Lauren Hawkins said.
She was in and out of Riley multiple times for the first two years and endured six surgeries.
Even though she is a nurse by training, Hawkins acknowledged that her daughter’s complex medical situation was daunting. She recalls clearly a conversation she had with Dr. Vanderpool when Clara was in the NICU.
“He said he would be with Clara for the duration, even when she goes to kindergarten,” Hawkins said. “I just looked at that baby and thought, how in the world are we going to be able to send that child to kindergarten?”
Well, it happened last fall. Little Clara Hawkins started kindergarten. No tubes or anything to slow her down.
She’s tiny, for sure – 36 pounds at her most recent weigh-in – but she’s mighty, Dr. Vanderpool said.
“She is gaining weight, but super slow,” he said, acknowledging Hawkins’ concerns about her daughter’s size. “At this age, she might not gain weight for a month and the next month, she could gain 2 pounds.”
Developmentally, she looks amazing, Hawkins and the physician agreed. And academically, she’s a “superstar,” her mom said.
“In her kindergarten class, she isn’t the smallest, but she definitely is on the smaller end,” Hawkins said. “She’s just a peanut.”
She eats well – chicken nuggets are her favorite – so it’s a mystery to her mom why she is so tiny.
During a recent visit to Riley at IU Health North Hospital, Dr. Vanderpool offered Hawkins samples of liquid supplements to boost Clara’s calorie intake and suggested adding more butter, cream, oil and whole milk in everyday cooking for Clara’s benefit.
She drinks mostly water, her mom said, because she refuses to drink milk.
“She may need to eat more calories to make up for the calories she’s not drinking,” Dr. Vanderpool said. “We know that her absorption is not 100 percent because she doesn’t have full intestinal anatomy.”
Finding the sweet spot in Clara’s nutritional health has been a delicate balance for years, Hawkins said, a journey that has required close partnership with Riley’s nutrition team.
They have literally been a lifeline through some of Clara’s most challenging days, Hawkins said.
“Each kid with short gut is so different in what they can tolerate, and the nutrition team has been a big part of figuring out what we can do next, whether that was getting her off TPN, advancing her NG feedings, figuring out what she could tolerate and how much volume to give her, or getting her to stop throwing up.”
The dietitians helped Hawkins develop a plan for a blended diet, which included a complicated recipe with formula, baby foods, oil and other nutrients.
“No way could we have done that on our own,” Hawkins said. “I appreciate that whole office and how kind and caring they were and how willing they were to work with me as a parent to figure out what was best for her.”
That same team will be recognized next month with a national Clinical Nutrition Team of Distinction Award. The award will be presented at the ASPEN Nutrition Science and Practice Conference in Las Vegas.
“That cohort that came together to take care of her – the surgery team (headed by Dr. Fred Rescorla), the nutrition team, the GI team – were such integral parts of her care. They have been with us since the very beginning.”
That thought takes Hawkins right back to those days in the NICU when she couldn’t imagine life for her little girl beyond that moment.
Now, Clara is thriving.
“She is so fun and bright, very clever, spirited and a little stubborn,” her mom said.
“We are still figuring out how her gut responds to different things, but she can eat pretty much a normal diet. Most people who see her would never guess that she had been through so much.”
Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org
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