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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Open Heart film: A closer look at Rwandan children with heart disease

open heart

The short-subject documentary “Open Heart,” nominated for a 2013 Oscar, follows eight Rwandan children who traveled more than 2,000 miles for heart surgery at the only cost-free pediatric heart center in Africa.

Roughly 18 million people in Africa suffer from rheumatic heart disease and need surgery urgently to repair their damaged heart valves. Nearly two-thirds are children, and roughly 300,000 will die in 2015 due to inadequate access to proper medical care. The Salam Center in Sudan is the only medical facility on the continent that provides state-of-the-art cardiac surgery at no cost to patients.

Emmanuel Rusingiza, MD, one of two pediatric cardiologists in Rwanda, referred each child in the film for surgery. Due to financial constraints at Salam, Rusingiza can never send more than a handful of patients at a time. Deciding which patients to refer is a troubling task that weighs on his mind constantly.

“If we see a patient dying because it’s too late to do surgery, or it’s not possible … it’s very hard on me…when you know that there is something which should be done but which has not been done because you don’t have the means.” – Emmanuel Rusingiza, 2012

Cheerful and encouraging with his patients, Rusingiza is solemn and direct with their parents, who must understand the magnitude of their situation. His conversation with the father of 6-year-old Angelique before she departed for surgery was one of the tensest scenes in the film.

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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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