Kids don’t have to be really thin to have an eating disorder.
Not everyone with an eating disorder looks like he or she has an eating disorder. The condition is often hidden in secret habits or obsessions. For example, binge eating and bulimia — or binging and purging — are common eating disorders not necessarily associated with thinness. …
Justin Kibler is tall, strong and lean. At 18, he’s already a competitive rodeo star and an active member of Future Farmers of America (FFA). Looking at him, “he’s the picture of health.” But what can’t be seen, just by looking, is that just four years ago, Justin developed an extremely rare and dangerous disease called midaortic syndrome (MAS). And he needed special care that no one in his entire home state of Arizona could provide.
Midaortic syndrome is characterized by a narrowing of the parts of the aorta (the main artery that delivers oxygen-rich blood throughout the body), running through the chest and abdomen. MAS causes severe high blood pressure and can also significantly damage the brain, kidneys, intestines and limbs. Untreated, the disease is debilitating and life-threatening.
Most children with MAS have obvious symptoms of physical decline, but “Justin was asymptomatic — up to and after the diagnosis, he felt fine.” says his mother, Wendy. …
We last saw Kenslie Shealy in the spring of 2015, as she was settling back into life at home in South Carolina after a long stay at Boston Children’s Hospital. Kenslie, now 4, had emergency surgery for midaortic syndrome (MAS), a rare condition that affects the heart and kidneys. Untreated, the condition can lead to damage in the brain, intestines and limbs.
She recovered well after her first surgery, performed by kidney and liver surgeon Dr. Heung Bae Kim, but her parents, Lori and Calvin, knew she wasn’t “out of the woods” quite yet. Kenslie would eventually need a follow-up surgery to further expand her aorta. She needed to grow a bit more first, so her doctors didn’t set a date for her second procedure.
“They thought she was going to have to wait longer, until she was about 7 or 10 years old, but she’s already outgrowing the stents they put in last winter,” says Lori. “So they scheduled her for September. It’s a good sign. It means she’s healthy, developing well and was ready for it before they thought she would be.”
This summer, while Kenslie played outside and swam as much as possible, her parents planned for what they hoped will be their last multi-week stay in Boston for some time. …
While each Journal has a different topic, every Journal includes providers who are grateful for the chance to work with the amazing children and families at Boston Children’s Hospital. Here are some of their experiences, in their own words:
I think probably the most challenging and the most rewarding thing in this job is taking care of these incredible families. Every day I learn something new about parenting from these parents and about perseverance from these kids. The biggest challenges are the biggest rewards, because they go hand in hand, and it’s such an honor to be part of their journey.
This job is one that challenges you to be a better person every day. It really makes you take a different perspective on things. The kids and the families are so inspiring for what they go through, what they want to do to help others, the connection they feel with their community of other transplant patients and with people in general: I think that’s an extremely rewarding part of it. Obviously it’s challenging work, just the nature of it, and you have to be prepared for some sad days when you’re in this career, but it’s also very much about celebrating life while you’re here. That’s a great thing.