Emily Whitacre feels free. Her young son Henry feels it too.
Henry, who celebrated his fourth birthday by getting a kidney transplant last summer, is no longer tethered to a dialysis machine at Riley Hospital for Children four days a week. On this day, he is running, jumping, playing with cars and mugging for the camera in the Riley Outpatient Center.
It’s a new life for mom and son, who planned most days around trips from their home in Fort Wayne to Indianapolis for dialysis. It was their routine for 18 months. Before that, Henry was on home dialysis, but a series of setbacks led him back to Riley, where he had already spent months in the NICU after being born with posterior urethral valves, an abnormality of the urethra, the tube that drains urine from the bladder. The condition prevented his kidneys from developing normally, leaving him with end-stage renal disease at birth.
Those early years weren’t easy for Henry or his parents. On more than one occasion, they weren’t sure if he was going to make it, but fast-forward to today and it’s like he’s a new kid, and life has begun again for the family, who put a lot of things on hold for years.
The past nine months have been a whirlwind. First, the transplant last July, then a wedding. Not Henry’s, but his mom and dad’s. Emily married Kevin Whitacre in December, and the couple will welcome a baby girl into their family in June. She will be called Gertrude Grace, GG for short.
Next month, they will take their first family vacation. When Henry hears his mom say vacation, he pipes up with the destination, “The beach!” It will be his first time seeing the ocean.
“We get to do all kinds of stuff now,” Emily said, as Henry darted from toy to toy in the ROC waiting area. That means a lot of playing on Henry’s part. He loves to build things and take things apart, he loves to play games – especially Pop the Pig, and he is a Paw Patrol fanatic.
It’s a bit exhausting – for Mom, who describes her first-born as sweet and tender-hearted, with a dose of attitude. When he gets angry, she said, he’ll throw his arms down to his side, stomp and growl.
“The biggest challenge for me is just keeping up,” she said. “He just wants to go all the time.”
Of course, she wouldn’t have it any other way.
Eating is Henry’s biggest challenge medically, she said. Though he was eating some foods before his transplant, his go-to snack was Cheetos. Now, that is all he will eat, so an NG tube provides the nutrients and medications he needs.
Her son has aversion and sensory issues when it comes to food or drink in his mouth, and he has a tongue strength issue. She hopes therapy will help him relearn how to eat and drink.
“The Cheetos go down fine – it’s the strangest thing,” she said. “We have to override that fear that that’s the only thing he can eat.”
As she talks, Henry interrupts to ask for her help to play with a toy being used by another little boy nearby. “Use your words,” she gently reminds him. “If you want to play cars with him, ask him nicely and don’t be so shy.”
Anyone who knows Henry might not believe the busy little boy with a wide grin and contagious laugh could be shy, but he hasn’t really had much practice interacting with kids at eye level. He had his friends in dialysis, but they were all confined to beds several feet apart.
“He loves to play and he loves the idea of being with other kids but when actually faced with interacting, he clams up,” Emily said.
School might change that. Henry is bright, but he’s never been in formal school. His parents anticipate he will wait another year for kindergarten and attend preschool in the fall.
He is growing, but slowly, his mom said. He weighs 34 pounds, about 5 more than he did before his transplant. His feet are definitely getting bigger, she said. “I think he’s gone up two sizes since transplant.”
But he is still “itty bitty,” she said. “If you would put him in a room with other 4 ½-year-olds he would definitely be the smallest.”
Emily has gone back to work part time, so a home health nurse comes in to care for Henry a few days a week, but Mondays are usually “Henry and Mom day,” she said. “We clean house and hang out. We put music on, and he likes to dance and play.”
Henry’s transplant was performed by Dr. William Goggins, who has performed more than 2,000 kidney transplants. The director of adult and pediatric kidney transplantation at IU Health is considered a rock star in the kidney transplant world.
The donor kidney came from a childhood friend of Emily’s, someone she hadn’t seen in years. But when Emily reached out in a desperate plea on Facebook more than a year ago, Colleen Carnes stepped up to volunteer, and testing revealed she was a match. Carnes attended Emily and Kevin’s wedding, and the Whitacres are planning a July party to celebrate Henry’s birthday and his one-year kidney anniversary, with Carnes as a special guest of honor.
Since surgery, Henry has continued to improve. Kevin and Emily know that the gift their son was given might last 20 years, or it might last only two years.
“We’re just going to live and take advantage of what we have, then we’ll deal with whatever may come when it comes and we’ll start all over again.”
In the meantime, she wants to make this journey easier for other parents faced with dialysis. She will be participating in a webinar with dialysis nurse Suzie Hedrick and a physician about what to expect when your child goes on dialysis.
“It’s really cool to turn all of this into a testimony and share our story with other parents and hopefully bring them a smidge of comfort,” Emily said. “My hope is that we can make it a little less overwhelming.”
– By Maureen Gilmer, IU Health senior journalist
Photos provided and by Mike Dickbernd, IU Health visual journalist
Family photo by Jennifer Fox, JFox Photography