Stories about: Chiari Malformation

Our patients’ stories: Treating “all” of Courtney’s headaches

left to right: Alyssa Lebel MD, patient Courtney Macari, Victoria E. Karian, RN, MSN, CPNP, and Lori McDonald-Nolan, RN

School can be hard for any kid, but do you know what it’s like to be in class with really bad headaches that make you want to go home every day, or just not get out of bed? That was my life for some time, until Boston Children’s Hospital helped me get better.

My name is Courtney Macari, and I am 12 years old. When I was only five I had a traumatic brain injury. One day when the whole class was out in the playground, a boy ran into me, bouncing me into the playground slide. When I got up off the ground all of my friends told me that I had a huge bump on the left side of my face. I went to the teacher and told her what had happened, so she sent me to see the nurse. The nurse looked at me and then called my dad, Reggie, to take me to the hospital. At the emergency room the doctors told us that I had a concussion and sent me home. Hours later I had a terrible headache and severe vomiting, so we went back to the emergency room. On that second hospital trip my mom, Nancy, my dad and I were told the worst news—I had a bleed in my brain and needed to be taken in an ambulance to Boston Children’s.

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Clues to Chiari: A family’s search makes all the difference

Ryan

At 7 months old, Ryan Murphy of Ulster County, NY, was a full-term, healthy, happy baby. He weighed almost 23 pounds—in the 95th percentile for his age.

“Everything was picture perfect until he was around 9 months old,” says his father, Justin. “He was thriving.”

But then things changed. Ryan began having difficulties feeding: He began coughing and choking.

“Over the next few months, it progressively got worse,” recalls his mother, Kerri. “Then solids became a problem. He would gag, throw up, cough.”

But Ryan began losing weight. An ear, nose and throat specialist (ENT) recommended a modified barium swallow test, which showed that Ryan was aspirating liquids into his lungs. Refusing thickened liquids, Ryan could drink only through a low-flow bottle nipple designed for preemies.

Then came an injection of a collagen gel around Ryan’s larynx, on the theory that he might have an abnormal opening in his larynx, a rare condition known as a laryngeal cleft.

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Coping with the stress of a childhood illness

Childhood illness can be difficult on the whole family. Shannon Kaiser, a blogger and mother of two chronically ill children, shares how she and her husband deal with the stress created by their children’s medical conditions.

If you drove by my house while the kids were getting ready for school this morning, it would’ve looked like a scene from an old TV show. Lunches were handed out, good-bye hugs given, and in a blur three of my kids are out the door, laughing and running towards the big yellow school bus at the end of the street.

Seems picture perfect, doesn’t it?

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