Stories about: Our patients’ stories

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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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

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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Nearly 40 years after milestone ACL reconstruction surgery, Puck skis like a kid

WheatonPuck_52650004 (2)“I’ve skied 1.7 million vertical feet in the last five years,” says 36-year-old Philip ‘Puck’ Wheaton. It’s an awful lot of skiing, especially for a guy who was born without an anterior cruciate ligament (ACL)—the critical ligament that holds the knee together.

When Puck had started walking in 1979, he seemed to wobble a bit—like most toddlers do, says his mother Liz Wheaton. At his 18-month checkup, his pediatrician determined there was more to Puck’s unsteadiness than run-of-the-mill toddler wobbliness. He referred Puck to Lyle Micheli, MD, director of Boston Children’s Hospital Sports Medicine Division.

“Dr. Micheli was right on the case and determined that Puck was missing his ACL,” says Liz.

An innovation in ACL surgery

Puck’s condition made for a very challenging surgical dilemma. Surgery to reconstruct torn ACLs was pioneered in the late 1960s, but it required drill holes through the knee. The operation couldn’t be safely performed on growing children because the drill holes could damage the growth plates of the knee and disrupt future leg growth. In fact, no surgeon had attempted ACL reconstruction surgery on a child younger than age two at the time.

Micheli did what the world’s best surgeons do. He improvised and innovated.

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