From "perfect" to perplexing
David and Darcie Hadley called their daughter Addison “the perfect baby.” She was adorable, calm and content. But, after just a few months, everything changed. Addy cried all day long. She fussed during feedings. And as she learned to crawl, she sometimes hit her head repeatedly against the floor. The Hadleys brought up their concerns at doctor visits. “She would have bruises on her head and they’d say, ‘That’s just her coordination - she’s just getting used to holding up her head,’” Darcie recalls.
As Addy grew older, her parents tried to introduce baby food, but she refused to eat. The crying continued. Loved ones chalked it up to colic. With her first birthday approaching, Addy developed what seemed like a severe cold. She couldn’t drink anything without coughing and throwing up. The Hadleys brought her to their family doctor who noticed she was dehydrated and her oxygen levels were dangerously low. He sent the family straight to Riley Hospital for Children at IU Health. There the puzzle pieces finally started coming together.
Solving a mystery
Addy was quickly placed under the care of Abby Klemsz, M.D., Ph.D., who heads the Complex Care which coordinates the care of children with multiple medical or developmental issues. A feeding study revealed Addy was aspirating when she tried to drink. Overnight, her medical team discovered another alarming problem - several episodes where her heart rate and respiratory rate would drop.
“We started out trying to figure out, is this a heart issue? Is this a respiratory issue? Is this an infectious issue?” explains Dr. Klemsz. “That’s the beauty of Riley is we have all these subspecialists right at our fingertips.”
Systematically, Dr. Klemsz and her team ran the necessary tests. A head CT scan revealed some abnormalities. She called in neurosurgeon Laurie Ackerman, M.D., who knew exactly where she wanted to start looking.
“We asked for an MRI of the back of the brain,” explains Dr. Ackerman. It confirmed what she suspected. “The bottom part of the cerebellum called the cerebellar tonsils were dropping down through the hole in the base of the skull and putting pressure on the brain stem and spinal cord.” Dr. Ackerman and Dr. Klemsz met with the Hadleys and gave them a name for the condition that was causing all of Addy’s problems: type 1 Chiari malformation.
Happily Ever After
Just a few days later, Dr. Ackerman performed a three-hour Chiari decompression surgery on Addy - one of 400 such operations performed in the last decade at Riley Hospital. Addy’s case was on the severe end of the spectrum, but her results were excellent. She went home just four days later.
Now at age two-and-a-half, Addy eats, chatters and runs like every other toddler. Every one of her troublesome symptoms has disappeared. It’s the kind of happy ending doctors love to see. “The system worked as it was supposed to,” says Dr. Ackerman. “Her pediatrician sent her on to Riley and we were able to pinpoint a problem and do something to make it better. That, for us, is the greatest thing.”
“Thank you is not enough,” says David. He and Darcie say they’ll do whatever they can to support Riley Hospital - a place that rescued Addy from a painful, difficult life. “We will forever be grateful,” says Darcie. “She’s a totally different baby. We call her Version 2.0!”