patient story

patient name: Ava Coder

age: 2

condition: aHUS

seen in: nephrology

providers: Erin Dahlinghaus. MD

On December 18, 2022, Chelsea and Josh Coder noticed that their 21-month-old daughter Ava was very lethargic and she wasn’t urinating. She had been sick with a virus for seven days and her pediatrician told the Coders that the virus would eventually run its course. However, when Ava began vomiting, mom and dad knew it was time to go to the emergency department. This was not their first trip to Dayton Children’s. Ava was hospitalized at four months old for RSV and stayed in the hospital for five days. Experience showed the Coders that they could count on exceptional care at Dayton Children’s.

“The nurses were amazing and knew something was wrong right away,” said Chelsea.

The emergency department providers ran tests that indicated Ava needed additional care and she was admitted to the pediatric intensive care unit (PICU). It was there that Ava was diagnosed with an extremely rare disease called atypical hemolytic uremic syndrome (aHUS). “The PICU doctor came in and said he thought Ava had a rare disease called aHUS and he need to do more testing to confirm. I was in shock,” said Chelsea. “We though she just had a bad virus.”

atypical hemolytic uremic syndrome (aHUS)

aHUS is a very rare disease that causes tiny blood clots to form in the blood vessels, blocking blood flow to important organs. aHUS can cause kidney failure, heart disease and other serious health problems. While there is no known cure for aHUS, it can be treated. The aHUS Foundation estimates that fewer than 625 people in the United States have aHUS. 

Typically, in children, aHUS develops after an infection with the E. coli bacterium often found in contaminated food. aHUS can also develop as a result of taking certain medications, recent illness, or may result from a cancer present in the body, although these causes are less common. Some rare cases of aHUS are genetic.

dialysis and treatment

After her diagnosis, Ava had to have surgery the next morning to have a hemodialysis (HD) catheter placed for treatment. Chief of nephrology, Dr. Dahlinghaus, met with the Coder family and explained the procedure and treatment.

“I told Ava's family that her kidney injury was severe and she needed dialysis to do the job of her kidneys, but that I hoped and anticipated that it would be temporary and that her kidneys could heal after we started treatment for her aHUS” said Dr. Dahlinghaus. 

She further explained that hemodialysis is a treatment used when kidneys fail and can no longer clean the blood and remove extra fluid from the body. The same day Ava started dialysis, she started treatment with Eculizumab, an IV medication that stops the tiny clots from forming in her blood vessels.

After 11 days of dialysis, Ava’s levels (creatinine levels, which most reflect kidney function, as well as electrolytes and blood urea nitrogen levels) improved so she had to have another surgery to get the HD catheter out and a port placed for infusions. Ava spent a total of 27 days in the hospital. While it is never fun being in the hospital, Ava created a special bond with the nurses. Ava enjoyed playing with the Vocera device the nurses use to communicate to each other.

“It is like a fancy walkie-talkie. What kid doesn’t love that?” said Chelsea.

That bond continued at home when a Dayton Children’s home care nurse visited Ava for the first time. Ava recognized she was a Dayton Children’s employee and ran to greet her with a hug!

It is unknown how long Ava will have to keep her port and get infusions. It could be years depending on how well and fast her body reacts to the infusions. But no matter how long it takes the Coders know that Ava is getting exceptional treatment and care.

“We are so thankful for the wonderful nurses, doctors and staff at Dayton Children’s. They saved our daughter’s life,” said Chelsea.

Ava is home and happily enjoying Coco Melon and Mrs. Rachel on YouTube, and being her sweet self.