Aiden’s story: Finding care and community while living with kidney disease

When Darcie was 36 weeks pregnant, she went to her OB/GYN for a routine ultrasound. Her doctor said her baby’s kidneys were "glowing" and "looked dilated." Darcie had no idea what that meant, but knew it couldn't be good that she was being sent for a more detailed ultrasound.

A more detailed ultrasound showed that her baby’s kidneys were swollen with a buildup of urine, a condition called hydronephrosis. And that meant that Darcie needed to be induced – right then and there.

"I was in tears and in shock because I wasn’t prepared to give birth at all. We didn’t have any clothes for our baby, a car seat – or anything. It was terrifying," Darcie says.

Hours later, 6-pound, 4-ounce baby Aiden was born. Further testing confirmed the cause of Aiden’s hydronephrosis, a condition called bilateral vesicoureteral reflux (VUR). VUR happens when urine flows from the bladder to the kidneys – upwards instead of downwards. Aiden was soon referred to Children's Health℠ for more specialized kidney care.

At Children’s Health, Aiden’s family met with a urologist and with Jyothsna Gattineni, M.D., Pediatric Nephrologist at Children’s Health and Associate Professor at UT Southwestern.

Aiden was diagnosed with the most severe form of VUR – grade five, which meant he’d need surgery at seven months old to re-position the tubes (ureters) that carry urine out of the body.

Surgery for VUR – and a diagnosis of kidney disease

For many infants, surgery for VUR resolves bladder and kidney problems. In Aiden’s case, surgery did help urine to flow in the right direction. But it didn’t help him empty his bladder completely – which was straining his kidneys.

"Aiden had stage 3 kidney disease, which meant we’d need to monitor his kidney function, acidosis, blood pressure, anemia, bone disease and growth and nutrition – long-term," Dr. Gattineni says. "But the good news was we'd caught his kidney disease early and started early intervention, which can go a long way towards preventing kidney disease from progressing. And that’s our primary goal."

Aiden’s family adapted to new routines to support his health. They learned how to use a catheter at home to ensure he fully emptied his bladder. They also fed him a special formula to give him the extra calories and nutrients he needed to grow.

"Kids with kidney disease can struggle to get adequate nutrition. They may not feel as hungry as other kids. They also have an increased tendency to have vomiting and can have vitamin and micronutrient deficiencies," says Dr. Gattineni. "A big part of ongoing kidney care are blood tests that let us know how a child is doing and giving them medications for acidosis, anemia, high blood pressure, growth, and things like high phosphate levels."

Darcie and her family learned how to monitor Aiden’s weight and diet at home. And Dr. Gattineni – and other members of Aiden’s care team – including a gastroenterologist, a feeding specialist and a dietitian – provided ongoing education about what foods Aiden should eat and what foods he needed to avoid.

Aiden continued to grow and have regular blood tests and ultrasounds to check his kidney function. But by the time he was four, Aiden had stopped gaining weight. The family could no longer avoid a discussion about a G-tube (GT).

The family was scared, especially young Aiden. But Aiden’s Child Life specialists were there to comfort and distract him before his G-tube surgery with his favorite Wii games.

"It helps so much that Children’s Health does everything they can to make being in the hospital fun and make kids feel special," Darcie says.

Aiden also found joy in participating in the hospital’s Seacrest Studios Bingo games. These moments of fun helped him feel like a normal kid, despite his medical challenges.

Feeling like extended family at the hospital

Having fun and feeling welcome has been especially important for Aiden’s family. They’ve logged countless hours at Children’s Health because Aiden’s sister, Abbey, also has complex medical needs.

"Anytime we go into a normal, non-children’s hospital, it's kind of gloom and doom – and not really welcoming," Darcie says. "All these people tell you: 'You can't go there, you can't do that.' But at Children's Health, if you take the wrong turn, someone's there to say, 'Can I help you find your way?'"

Making families feel welcome and having time to get to know them is one of Dr. Gattineni’s favorite things about her job. “The kids come in with a huge smile and they give you a hug and you develop these amazing long-standing relationships,” she says.

After more than a decade under Dr. Gattineni’s care, Darcie doesn’t hesitate to send updates and pictures through MyChart, like when Aiden’s artwork was featured at a local museum.

And she’s no longer surprised about how warmly they relate to Aiden.

"Dr. Gattineni and her nurse will come in and sit down right beside Aiden and ask about what's going on in his personal life, what he's been up to. And they’ll remember to ask about his art showcase," Darcie says.

Building a supportive community

The whole-person, whole-family care that Aiden and his family have received hasn’t just been within the hospital. It's extended beyond the hospital walls too.

"Everyone at Children’s Health has always been supportive. But they’ve also helped us connect with other families, which has been so helpful," Darcie says.

The family has enjoyed attending the Children’s Health renal holiday party. Organized by Child Life, it’s a chance for families to have fun and connect with other families living with kidney disease.

For the past three years, Aiden has also attended Kidney Camp, where he gets to go swimming, ride horses, canoe and fish. Last year, Aiden came home with an award for catching the most fish.

"The kids get so much out of camp. They have so much fun. And they learn that they’re not alone – and even that some kids have it worse – because we’re equipped to do kidney dialysis at camp," says Dr. Gattineni. "Seeing kids on dialysis can motivate kids like Aiden to take good care of themselves."

Living G-Tube free and inspiring others

Now, at age 11, Aiden is living G-tube free because he's been able to gain enough weight. He no longer needs to see a gastroenterologist or a dietitian – just Dr. Gattineni. Getting to this place has been a team effort. But his mom is so thankful.

"As a tween, no longer having a G-tube has boosted Aiden's self-esteem. He feels like a new person," Darcie says.

Not having to worry about a feeding tube means Aiden can focus more on his many interests: video games, cars, Pokémon, playing the ukelele – and antiques.

"Aiden is an old soul. He’s really into antiques. He fell in love with them by helping my mom clean up my grandmother’s house. Now his dad takes him to local pawn shops to check out the antiques," Darcie says.

When asked if he wanted to share his health story, Aiden was quick to agree.

"I want to share my story so others don’t feel so alone, like they’re the only kid with kidney disease," Aiden says.

Read more about Aiden and his sister Abbey.

Learn more

Our Fetal Center provides early, in-utero diagnoses of kidney problems. Early detection of kidney disease can help families make an early treatment plan – and prevent the progression of kidney disease.

Our pediatric nephrology program has some of the top kidney experts in the country and is the largest clinic in North Texas. Our comprehensive, compassionate kidney care is renowned for its focus on whole-child health and wellbeing.