Kaylee's Hydrocephalus Diagnosis: You Can't Judge a Book by Its Cover

On Christmas eve in 2011, Mary D’Angelo found out that she was pregnant. She and her husband went through all of the normal doctor visits, and by that spring, they went in for an ultrasound to find out the sex of the baby.

Mary D’Angelo, Kaylee’s mom: “I could tell by the look on the ultrasound tech’s face that something was wrong.”

Her doctor sent her immediately to see the Fetal Care team, and that’s where they met Dr. Charles Stevenson.

Charles Stevenson, MD, Kaylee’s pediatric neurosurgeon: “The first picture that I saw of Kaylee was before she was ever born. It was an MRI of her brain while she was still in the womb, and a diagnosis of hydrocephalus had been made, first off of routine ultrasound and then off of a fetal MRI scan.”

Hydrocephalus, once known as “water on the brain” is an excess of cerebrospinal fluid. Tests revealed the fluid buildup in the brain of the baby Mary was carrying was severe. The scans looked like all fluid and very little brain.

Mary: “It was rough at first. I didn’t want the whole, you know, I didn’t want, you know a baby shower. Because I didn’t know what was gonna happen.”

Dr. Stevenson: “The first time that I met Kaylee in person was the day she was born. And that was to evaluate her here in the Neonatal Intensive Care Unit.”

Kaylee needed a shunt put into her brain when she was just 3 days old to drain the excess fluid. After that, she continued to see specialists at Cincinnati Children’s and needed more neurosurgeries, spinal cord surgery, hip surgery and eye surgery.

Mary: “We were prepared for the worst, we were. I was prepared for the tube feedings, the wheelchairs, the not walking, the non-verbal. Because those were all options we were given, like this could potentially be what she may be after she’s born.”

Spoiler alert: This is Kaylee today. She’s 5 years old and thriving. She walks, talks, eats and dances and has non-stop energy. She just went on a field trip to the zoo with her kindergarten class and will tell you all about it. She loves Disney, ballerinas and Peppa Pig.

Mary: “So we were prepared, and she has surpassed every milestone, you know, that has been put in front of her, and she’s just our little miracle. Every single one of her doctors is absolutely amazing. I can’t imagine not having them as part of her care team because they are the ones, you know, that I feel as if have gotten her here.

Dr. Stevenson: “I can still remember her as a baby in the isolette in the NICU, like this. And now, every time I see her, she’s showing me how to play a video game, or she’s running around the room, or jumping up and down. So, it’s pretty amazing to think back where we were just a number of years ago.”

Mary: “To look at her chart and to look at Kaylee, it’s two different patients. Cause you see the list of everything that she’s gone through, and all her diagnosis, and to see Kaylee, it’s like you would never even know. You can’t judge a book by its cover. Kaylee’s a prime example of that.”

Kaylee: “I love you” (to dad). I love you, Mommy.”
Mary: “I love you too, baby.”
Kaylee: “I’m hungry”
Mary: "I know you're hungry."