From the category archives:

Our patients’ stories

Catching up with a dragon-slayer

by Guest Blogger on November 17, 2014

Congenital heart defect patient  George HunterLast summer we introduced you to William St. George Hunter, aka George, a little boy from South Carolina born with a congenital heart defect. Named for the mythical slayer of dragons, George was one of the earliest children to have a Melody valve—a replacement heart valve that can be expanded as a child grows—implanted into his heart to replace his mitral valve (which helps manage the flow of blood out of the heart to the rest of the body). 

 We checked in with his mother Elisabeth to see how George, now almost three years old, is doing. Here’s what she told us.

When last y’all wrote about our little dragon slayer, he had just become the twelfth child to have his heart’s mitral valve replaced with a Melody valve by cardiac surgeon Sitaram M. Emani, MD.

Once home, George immediately started gaining weight—something he’d not been able to do in months—and in just a couple months had caught up to where he should be. (It made this mother’s heart happy for him to have “respectable thighs” when I put him in bubble suits.) Full story »

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wounded warrior and child amputee show off one-armed pushupsAbout the blogger: Ten-year-old Jen Castro, from New Fairfield, Conn., was born a below-the-elbow amputee and has been a Boston Children’s Hospital patient for most of her life. She is an avid softball player.

Most kids dream of going to summer camp. But I’m not most kids. I was born a below-the-elbow amputee.

I don’t really like summer camp. It was never easy for me to be around other kids who don’t know me. I get stares, endless questions, and then whispers and comments: “Look at that girl, she’s missing her arm.”

I’d rather not attend.

Wounded Warrior Amputee Softball Camp

So you can just imagine what I felt like when my mom told me about a camp that was open only to kids who were missing limbs. That all the instructors would be missing limbs too. For a moment, she had my attention when she told me it was a softball camp, because I love softball. But only for a moment! Full story »

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Kailyn Looby is 16-years old and has Erb’s Palsy; an injury suffered at birth that resulted in the permanent damage to nerves in her neck and shoulder. Despite the physical limitations of her disability, she enjoys soccer, hiking, swimming, rock climbing and kayaking. She loves music and wants to travel the world someday.

I’m a 16-year-old high school junior with a left brachial plexus injury (BPI). This injury has always been part of my life, and things got rough a few years ago. Here’s what I learned:

1. You need a good support system.

Kailyn Looby resize

You also need to surround yourself with supportive friends. I haven’t always had understanding friends, but when I got to high school, I met five of the most amazing, supportive people ever. That support makes all the difference. It makes everything easier knowing that you’ve got someone to back you up.

2. Meeting other kids with BPI is hugely important.

This injury has led me to connect with so many amazing people through organizations like the United Brachial Plexus Network (UBPN). I’ve met Paralympians and a man who summited Mount Everest. The other kids that I’ve met at Camp UBPN are so inspiring. I’ve made some lifelong friends. We compare hair styling techniques or surgery experiences.

It’s important, for me at least, to interact with people like me. No matter how supportive your friends and family are, the only people who can ever truly understand what living with this injury is like are other people who have it.

I’m not afraid to put myself out there when I’m surrounded by people like me. I tried archery at the last UBPN camp. I would have been much more hesitant trying it back at home, because I’d look different. It’s not something I can put into words—how it feels to be around people who get it.

3. Find your outlet.

Unfortunately, you can’t be at UBPN camp 24/7, so there needs to be an outlet. This injury can be frustrating, and it can make you angry, and sometimes it just feels so unfair. Find a way to let all the negative energy out.

My outlets are writing and music. I wrote down everything I was feeling. Getting it on paper helps me sort out what I am feeling. Music is my stress relief. When I have a bad pain day or am just frustrated, I plug in my iPod and jam.

4. Speak up.

I think it’s important that I have input in the decisions made involving my arm and treatment. That can go both ways though. There was a time when I refused to try anything, because I was convinced it wouldn’t work. Everything I had tried thus far had failed and I ended up in pain, and the slight chance that the newest idea would work wasn’t worth it to me.

It was important that I had some say in the decision-making process, but no one could convince me to take another chance. It’s a hard balance to achieve.

Also, don’t be afraid to educate people about the injury. It’s important to advocate for yourself. You’re going to have to explain it a lot—to classmates, to teachers, to coaches. I’ve got the spiel down pat. Speaking up has opened up a lot of doors for me. I’ve had the opportunity to speak for the Understanding Disabilities program in my town for several years. Last year, I had the privilege to speak as part of a panel at the John Hopkins Symposium in Baltimore.

5. The forecast is foggy, but the future is bright.

There is no way to know what this injury will throw at you. It’s bound to not be very fun sometimes. It took me three years to find a solution to my pain, but I found a solution, and so will you. The road to getting to the solution can be frustrating. There will be questions, especially when it comes time to drive, apply for a job or apply to college. You’ll figure it out. I’m going to risk sounding extremely cheesy saying this, but you can do whatever you want to do. This injury won’t hold you back from doing anything, as long as you don’t let it.

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One patient’s story: my toddler’s head injury

by Boston Children's Hospital staff on March 6, 2014

Kate Gray is the mother of William, an active toddler whose serious fall almost ended in tragedy.

I call William my spirited child. Like many 3 year-olds, he loves to run and jump, and does it without the slightest sense of fear. His boundless energy has always been one of his most endearing features, but in a split second, it also almost took him from us forever.

Up, up and away! Like many toddlers, William is a ball of energy

A few days before Christmas, my husband Mark and I had some last minute holiday chores to do so we decided to beat the rush by heading out early in the morning. As we walked out the front door William and I were standing side by side, just inches from each other. Suddenly, he turned to go back towards the door and somehow lost his footing. He fell backwards off the steps and hit the back of his head on the brick walkway as he landed. As I scooped him up to quiet his crying, I didn’t see any sign of injury. No goose egg or bump, not even a scratch. In less than five minutes he had stopped crying and we had begun our busy day. Full story »

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For most first-time parents, the initial few weeks of caring for a new baby can be nerve-wracking. But, the first month of parenting for Kevin and Maureen Sturtevant was nothing short of terrifying.

Days after coming home from the hospital, their son Sam refused to eat and felt cold to the touch. Worried, the Sturtevants took Sam to their local hospital where he was quickly admitted. In the coming days, Sam was diagnosed as having an enterovirus that was affecting all his organs, especially his liver, which was beginning to fail.

Sam’s condition continued to worsen. It soon became clear he needed higher subspecialty liver care than what was available in his local hospital, so his care team arranged for the family to be transferred to Boston Children’s Hospital’s Center for Childhood Liver Disease.

Moments after they arrived in Boston, the Sturtevants met a whole team of people who would be taking over Sam’s care, including Center for Childhood Liver Disease Associate Director Scott Elisofon, MD. “We met everyone, from neonatologists to nephrologists. It was a lot to take in at first, but Dr. Elisofon acted as our point person, which made things less overwhelming,” Kevin says. “And even though we spoke mostly with him, we always knew there was an entire team of people supporting Sam and us. It made a difficult time a little easier.” Full story »

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Our patients’ stories: Treating Owen’s encephalocele

by Tripp Underwood on February 7, 2014

When Jennifer and Kevin Sheridan went for a routine 14-week ultrasound of their unborn son Owen, the only surprise the young couple expected was hearing if they were having a boy or a girl. But seconds after the first images of Owen registered on the grainy, black and white ultrasound screen, the Sheridans’ lives changed.

The pictures showed that the top of Owen’s head hadn’t normally closed during early development, creating a sizable opening. Without the skull to encase them, spinal fluid and brain matter seeped through the hole, ballooning and expanding under his skin. The resulting growth, called an encephalocele, threatened to kill Owen during, or shortly after birth.

“We went from thinking about what color to paint the nursery to praying we’d get a least a few minutes with him before he passed,” Kevin remembers. “It was devastating.”

In spite of the prognosis, the Sheridans went through the pregnancy normally. Over the next few months, Owen grew, as did his encephalocele. By 26 weeks, the mass was nearly as large as Owen himself. But despite the size of the growth, tests showed Owen was developing typically. In fact, he was far more active inside the womb than Owen’s older sister, Aubrey, had been a year earlier. And while Jennifer and Kevin didn’t know it then, those prenatal kicks and turns would be the first indications of Owen’s fighting spirit—a spirit that would eventually come to define him. Full story »

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Motor vehicle injuries are one the leading causes of death among children in the United States. But many of these deaths could be prevented. Studies show that placing children in age- and size-appropriate car and booster seats can reduce serious and fatal car injuries by more than half. But remember, having the right car seat alone isn’t always enough—parents must make sure it has been installed correctly to fully protect the children who use them. 

Steven and Charles Novak

When Justine Novak brought her 3-year-old son Steven to a local bike helmet fitting and safety seminar, she though it’d be a nice way to spend an afternoon and double-check her son’s helmet. She had no idea that information she learned there would eventually save his life, and the life of his 1-year-old brother Charles.

The safety seminar was put on by the Injury Prevention Program at Boston Children’s Hospital, at the request of one of Justine’s neighbors. That morning Barbara DiGirolamo, MEd, an injury prevention specialist with the program, went to Justine’s neighborhood to check the helmets of all children in attendance to make sure they were the appropriate size and shape, and that they fit correctly. She also looked them over to ensure each was still in good, working condition because even a single crash can damage a helmet to the point where it’s no longer useful. Studies show that a child with an old, damaged or poor-fitting helmet is nearly twice as likely to sustain a brain injury in a bicycle accident.

After all the helmets were tested and adjusted to fit perfectly, DiGirolamo set up a bike obstacle course for the children, then handed out safety pamphlets to parents and offered them safety tips on a number of topics. Knowing she’d soon be in the market for new car seats because both Steven and Charles were outgrowing theirs, Justine asked DiGirolamo if she had any recommendations. She suggested Justine buy the seats directly through the Injury Prevention Program, which sells top-of-the-line car seats at cost, and then have a Certified Child Passenger Safety Technician (CPST) install them right into the vehicle. (If you prefer to buy a seat from another vendor, or already own a seat and just want to make sure it’s installed correctly, our safety technicians will assist you, free of charge.) Full story »

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My happy heart accident

by Guest Blogger on January 13, 2014

Caroline Wigglesworth is a patient of Boston Children’s Hospital’s Heart Center. In the following blog she describes how growing up with a serious heart condition has influenced the young woman she’s grown to be.

Caroline (photo by Ned Jackson Photography)

“Do you think that I’ll grow up to be old?”

“Will people treat me differently because of my scar?”

It’s not often that a 9 year old asks you questions you can’t answer. But this boy, with his cute grin, Spiderman pajamas and wires running from his arms and chest to the life-sustaining machines at his bedside, was asking me things that I, and even his doctors, couldn’t answer for sure.

Even though I couldn’t answer his questions directly, I could talk with him openly, and in doing so, take away some of the urgency in his questioning. We sat together on the Cardiac Unit of Boston Children’s Hospital and talked about his life and mine. I shared stories of who I was, who I wanted to become and what I like to do. I fielded his questions as best I could, for I had those very same questions when I was his age going through a similar experience as a Boston Children’s patient back in the 1990s. Full story »

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