One mother’s story: How rare disease changes your life

dattolifamilyI opened the door to my 10-year-old daughter’s bedroom on a bright October morning. It was a Friday—her “best day” as she called every Friday—and when light poured into her purple room, I thought her swollen mouth was one more symptom of the nasty cold and cough she’d been battling. The antibiotic would kick in soon.

When my daughter looked worse the next day, I took her to her pediatrician, who sent us to the emergency room. A virus, we were told. Come back tomorrow if anything changes. It did: Her eyes were red, she had a fever, and her mouth was blood red and much more swollen. “A bad virus,” the ER doctor told us.

By Monday morning, my daughter had even more sores in her mouth and red spots on her back. Her fever spiked at 104. We rushed to the pediatrician. “I never thought I would have to say this, because it’s just so rare,” the doctor said, “but it looks like Stevens Johnson Syndrome (SJS).”

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Should Cupcakes Be Banned From School Parties?

CMcCarthy1When my older children were in elementary school, I sent in cupcakes for their birthdays or for class parties.

My youngest is in elementary school now, and for his birthday, I sent in pencils and temporary tattoos for classmates — because the school doesn’t allow us to send in sweets anymore.

When the change was first made, my reaction was: For real? Banning sweets? Since when did some cupcakes at a birthday party become so dangerous and a big deal? Even as a pediatrician, I thought it was silly. There’s nothing wrong with eating sweets as long as your diet is overall a healthy one.

But therein lies the problem. Not all kids’ diets are healthy. And, as I’ve thought about this more, I’ve decided that there’s something to be said for setting standards — and an example.

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Kristin’s story: From open heart surgery patient to child life specialist

KD graduation with parents

There’s a saying: “Life’s roughest storms prove the strength in our anchors.” I have faced many storms in my life, and my anchors have grounded me with hope and strength.

I was born with complex congenital heart disease. By the time I was 36 hours old, I had been diagnosed with an atrial septal defect (ASD), ventricular septal defect (VSD), double outlet right ventricle, left and right ventricles reversed, dextracardia, mitral valve regurgitation and pulmonary stenosis. For many, this sounds like a long laundry list of defects, but for me and my family it became everyday life.

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Robotic surgery gives Connecticut toddler born with kidney defect a fresh start

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Payton Grassia and her mom, Jessica

Payton Grassia is all things preschooler. She loves finger painting and outdoor play, has a “big personality,” her mom says, and recently added big sister to her list of credentials.

But beyond her sweet smile and playful charm, this spunky three-and-a-half-year-old is also a fighter.

And her fight began before she was even born.

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