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A year ago Lilly Hatfield was diagnosed with sudden end stage renal disease. This Thanksgiving will take on a new meaning – her father recently gave her the gift of life.
By IU Health Senior Journalist T.J. Banes, email@example.com
They spent a month last year – including Thanksgiving – at Riley Hospital for Children at IU Health. Lilly Hatfield remembers the nurses, the doctors, and the staff members who became familiar faces during that holiday.
When she recently returned to that same hospital floor she was met with hugs and high-fives. This visit was different. This visit was a chance at new life.
Across the way – in another hospital, her father, Allen Hatfield, was donating a kidney at IU Health University Hospital.
For the past year, the family has kept a chalkboard in the kitchen of their Columbus home. They’ve marked down the days leading up to Lilly’s transplant.
“We wanted our home to be a place of healing – no sadness. We took that sadness out to the hospital hallway the first time we did emergent dialysis,” said Lilly’s mom and Allen’s wife, Misty Hatfield. That was the day that a pound of fluid was drained from Lilly’s body. She was screaming in fear and pain. It was Riley Hospital’s Dr. Amy Wilson, who specializes in kidney disease, who helped calm Lilly and reassured her parents.
“Doctor Wilson was a pillar of strength,” said Misty Hatfield. “Getting a diagnosis like that can throw you into a tailspin and she was the one who told us, ‘you have a healthy child.’”
Allen and Misty Hatfield remember that day as one filled with doubt about the health of their daughter.
It was last October when Lilly’s parents noticed she wasn’t eating or sleeping as much as usual. She was also vomiting. By the end of the month blood work showed her hemoglobin counts at 6.9. A typical hemoglobin level is about 11 to 18 grams per deciliter – depending on age and gender. Lilly’s levels were critical for kidney and liver failure. She was admitted to the hospital immediately with end stage renal disease.
It made little sense to her parents. Misty Hatfield had a healthy pregnancy. Lilly was a typical little girl who started life in a nursery decorated in dragonflies. She was a bubbly baby and an outgoing toddler. Despite the fact that she was adventurous and liked to climb trees, she never had a broken bone. Her only operation was at the age of four when she had a tonsillectomy.
As she grew up, she took an interest in science – especially astronomy. She enjoys reading about space and is fascinated by the beams of colored lights from her plasma ball. She likes working on Smithsonian activities and drawing and painting – especially clouds and waterfalls. Even when she missed three months of school, Lilly made the honor roll.
“She loves to do anything adults are involved with,” said her mother. “She knows every 80s and 90s song. The first time I heard her sing ‘September’ by Earth, Wind and Fire, I thought my child was an 80s child reincarnated.”
Lilly turned 13 on July 26 and has also shown an interest in cooking.
“I love watching cooking shows. I learned to make a rosemary reduction sauce so I make great rosemary lamb chops and chocolate chip cookies too,” said Lilly, the younger sister of Chantel Bingham, 22.
Her wit and humor continued into her teen years.
When a visitor recently entered her room at Riley Hospital she jokingly introduced an adult family friend as “Lilly.” She talked about sleepovers with friends, eating cheese again and soaking in a tub of bath bombs – things that she has restricted since her diagnosis. She started home dialysis last November and called herself, “Cyborg,” for half human, half robot.
The dialysis continued until she found a kidney match.
“The day after we found out she needed a kidney, I started the process,” said her dad. “It was a chance to help your kid get well again and return to her normal self. It’s been a long road of blood work, tests and waiting but I wouldn’t trade it for anything.”
On October 9, under the care of Dr. John A. Powelson, Allen Hatfield donated his kidney to his daughter, who was under the surgical care of Dr. William Goggins. Now the family is looking forward to regaining their footing with Lilly’s healthy kidney.
In the weeks leading up to surgery Lilly enjoyed a sleepover with friends at her home – where she could continue with dialysis. The family took a trip to Gatlinburg where she stuffed herself on a Bavarian cream puff. They rented a van so they could transport her dialysis equipment and adequate supplies.
“It’s been a gamut of emotions from stress, to anger, to sadness,” said Allen Hatfield. “We’re ready to turn things around.”
For Lilly that means fewer restrictions.
“I’m looking forward to sleepovers where I can actually go to my friends’ houses and to my Make-a-Wish cruise to the Mediterranean,” she said.