Putting the Pieces Together: Morgan’s Story

One of the scariest parts of any health journey is the beginning: All you have are questions, and all you want are answers. Jennefer Aquavia and Paul Willis know that feeling.

This past summer, their 10-year-old daughter, Morgan, starting having seizures – but not like any seizures they’d heard of before.

The day they realized what was happening, it was pouring outside, and Morgan had been napping on the couch. Jennefer walked into the living room and found Morgan sitting up, frozen stiff, eyes locked forward. When Jennefer yelled her name, Morgan snapped out of it. But she was confused. She couldn’t remember the past 10 to 15 seconds.

Jennefer called Morgan’s pediatrician and a friend down the street. She got the same advice from both. “They told us to come to Connecticut Children’s,” she says.

 
 

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“The social and emotional support was especially important”

Throughout the pandemic, Connecticut Children’s Emergency Department (ED) has remained open and safe. In the ED, a social worker came in to distract Morgan and play games while a care team put in her IV. Eventually, another team helped Morgan settle into an overnight room.

“I loved all of my doctors and nurses,” says Morgan. “Nothing like this has ever happened in our family, so it was really scary. But all of my doctors made me feel better.”

Morgan, a patient in nephrology, neurology and cardiology, poses for a photo with her mom.

She talked fashion with her pediatric cardiologist, Olga Toro-Salazar, MD. She met a dietitian also named Morgan, who shared details from her own health journey when she was around the same age. It all made her feel less nervous. Jennefer was touched by the thoughtfulness everyone showed her daughter.

“Morgan was given the best care you can possibly imagine,” says Jennefer. “All the social and emotional support was especially important for a little kid during COVID. As a parent, it was important for me too!”

> Related: How Connecticut Children’s keeps kids safe during COVID-19

“Dr. Matloff brought all the pieces together”

Just as important: They got answers.

As an integrated health system, Connecticut Children’s is a one-stop shop for complicated health questions, bringing together all the experts and services that a child needs.

Pediatric nephrologist Robyn Matloff, MD, MPH, was the champion of this process for Morgan.

Robyn Matloff, MD, with Morgan, one of her patients

When tests revealed that Morgan’s blood pressure was high, Dr. Matloff stepped in to manage this new, serious development in Morgan’s health. She ordered an exhaustive series of tests on Morgan’s kidneys and developed a plan to manage her hypertension.

But she didn’t stop there.

She also made sure Morgan received neurological tests to get to the bottom of her seizures, and coordinated Morgan’s visits with other Connecticut Children’s specialists. She was just as passionate about finding answers as Jennefer and Paul were.

“Dr. Matloff was the person who brought all the pieces together,” says Jennefer. “She believed us that Morgan was having seizures. She was an incredible advocate for our daughter.”

> Find a Connecticut Children’s location near you

“Any question, Connecticut Children’s is right there”

Morgan, who turned 11 years old in August, is now seen by Connecticut Children’s pediatric specialists in the divisions of Cardiology, Nephrology and Neurology, all from the convenience of Danbury (Connecticut Children’s also has Fairfield County locations in Fairfield, Shelton, Norwalk and Stamford).

Technically, her seizures are known as “partial focal seizures,” but everyone’s taken to calling them “staring episodes.” She will likely grow out of them. For now, she takes medication, closely monitored by pediatric neurologist William R. Yorns, Jr., DO. Dr. Matloff continues to manage Morgan’s hypertension. Tests also showed that Morgan has an enlarged heart muscle, which is being monitored by pediatric cardiologist Alicia Wang, MD.

Williams Yorns, Jr., MD, visits with one of his patients, Morgan

“I can’t say enough about this Connecticut Children’s team. I’m just so thankful for their diligence,” says Jennefer. “Every test was scheduled on time. Any time I call, I speak with a live person.”

She stays in touch with all of Morgan’s doctors using MyChart. She’s received texts from Dr. Yorns during his family vacation. She and Morgan are on a first-name basis with Dr. Matloff’s practice coordinator, Peter Villa.

“Any question I have,” she says, “Connecticut Children’s is right there to answer.”

> Download the MyChart app to communicate with your child’s doctors

“She stayed so strong through all of this”

As for Morgan?

She’s now three months seizure-free, cheerful and charming as ever. She is busy in the sixth grade, and at home in Woodbury with her parents and older sister Madison. She has lots of extracurricular interests: She loves ballet and crafting and the martial art krav maga, to name a few. On top of all this, she is passionate about helping other kids who are patients at Connecticut Children’s – the nicest testimonial Connecticut Children’s could ever receive.

“She stayed so strong through all of this, with such a positive attitude,” says Jennefer. “She is so thankful for all that Connecticut Children’s has done for her. We all are.”

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