When Audrey Costa was born, her mother’s greatest hope was that she would be able to hold her daughter and look in her eyes before Audrey passed away.
Tiffany Costa was 24-weeks pregnant when she found out her daughter had chronic renal (kidney) failure and would probably not survive outside of the womb. But as Costa says, “Audrey had other plans.”
“She came out kicking and screaming and very much alive at 32 weeks,” Costa said. “I never in a million years thought I would get to hear her cry. It was very unexpected.”
A feisty baby from the very beginning, Audrey spent seven weeks in the hospital and received care from our nationally ranked nephrology program. The nephrology team monitored Audrey’s kidney function and soon gave the Costas the good news: Audrey’s kidneys were partially functional.
“Children born with Audrey’s severity of chronic kidney disease have a very low survival rate past 1 year of age,” said Timothy Bunchman, M.D., professor and chief. “Audrey’s family plays a huge role in her ability to thrive. They have taken a very complicated patient and made it a walk in the park. Without their attention to detail, she wouldn’t be where she is today.”
Children with kidney problems require continuous comprehensive care, from frequent lab work and clinic visits to ultrasounds and nutritional counseling. Our nephrology program was developed to provide families such as Audrey’s with a multidisciplinary approach to care. Audrey’s team includes nephrologists to meet her medical needs, a nurse educator to help her family understand the diagnosis and treatment, a social worker to meet developmental-related and support needs, and a dietitian to address nutritional needs.
The team provides expert care for thousands of children from Virginia – and surrounding states. The program has more than 3,000 outpatient visits at four locations and 1,500 inpatient encounters a year, and U.S. News & World Report ranks the nephrology (kidney care) program at CHoR among the best programs in the nation in the new 2018-19 Best Children’s Hospitals rankings.
“The nephrology team is available to us anytime we need them,” Costa said. “I sometimes reach out to them in the middle of the night, and I often have a response within minutes. I feel like they genuinely care about Audrey and our whole family. I couldn’t imagine going through this without the team we have at CHoR.”
While Tiffany sees Bunchman as a medical resource, she says that Audrey sees him as a friend. “She talks about the team when she plays games at home. She’s even named her toys after Jules and Dr. Bunchman. The team is a pretty big part of our life, even when we’re healthy.”
“It’s one of those things that makes you appreciate that with a concerted team effort you can make a difference in a child’s life – and in a family’s life,” Bunchman said.
Audrey’s medical team expands into the community to her primary pediatrician, Kristen Powell, M.D. “Children like Audrey deteriorate quicker than a healthy child,” Bunchman said. “Any illness, even a cold, can cause decrease in renal function, but with great attention to detail from her parents and Dr. Powell, renal function can be maintained.”
Audrey also has a special VCU team member in her corner – Rodney the Ram.
“Audrey has always loved Rodney,” Costa said. “We go to games and she’s constantly looking for Rodney. During a hospital stay we sent Rodney a Facebook message and before we knew it he was coordinating with the hospital staff to come visit one of his biggest fans. It’s just one more reason why we believe in the care at VCU. Everyone, even Rodney, is dedicated to helping kids get better.”
Nutrition to grow
Bunchman says the social and nutritional support his team provides is often more important than the medical component. The nephrology team uses nutrition as a way to promote patient and kidney growth as many children with kidney disease have very specific nutritional needs.
For her first year of life, Audrey’s nutrition was supplemented with a feeding tube to ensure that she received vital nutrients to help her kidney function. She later completed the Feeding Program at our Brook Road Campus.
Because she was fed through a g-tube, Audrey never really ate solid foods at a young age. The Feeding Program helped her overcome oral aversion and taught her how to chew and eat.
The next nutritional phase included a diet low in potassium to help prevent the need for dialysis.
“With the right balance of nutrition and medication, Audrey lives a pretty normal life,” Costa said. “She’s on a see-food diet now – she sees food and she eats it.”
“It’s really hard to put into words,” Costa said. “I made a decision early on that I wasn’t going to let her disabilities define her. She’s so much healthier than we ever expected. We treat her like a normal kid. When she’s soaring high on the gymnastics swing and bouncing on the trampoline, we almost forget that she’s different.”
Audrey has come a long way in four years. From tube feedings and feeding therapy to multiple doctors’ visits and frequent hospital stays, Audrey has transitioned to visiting the nephrology team every two months for routine follow-up appointments. The team monitors her kidney function and growth, as well as blood pressure and nutritional needs.
“As she approaches adolescence, Audrey will need multiple surgeries to prepare her for a kidney transplant, but she should live a full productive life,” Bunchman said.
While Audrey continues to progress and grow, the nephrology team is conducting research that will benefit other children with kidney disease. Current research initiatives include prenatal renal disease, solid organ transplant and prevention of deterioration of renal function. The team is also educating future nephrologists through its pediatric nephrology fellowship program and developing specialized clinics for children who have nephrology-related hypertension.
In the meantime, Tiffany and Tony Costa have high hopes for Audrey.
“We want what any parent wants for their child,” Tiffany said. “We want her to be happy and successful. We want her to go to college, get married and have a family and never feel held back by anything that she has going on. She can do anything she wants.”