Lauren ’s life after transplant: Proving the impossible possible
I was born on January 29, 1992 with a birth defect called gastroschisis, which meant that my intestines extended outside my body through a small hole in my abdominal wall. I received a liver, small and large bowel transplant in December of 1992, just before my first birthday. Though I was transplanted in Pennsylvania, I have been cared for by the brilliant team at Boston Children’s Hospital ever since. When I was first recovering in Pennsylvania, my parents were told that I would never be able to swim in the ocean because I would have to have a central line in for the rest of my life. Well, to that person I would like to...
Source: Thrive, Children's Hospital Boston - November 28, 2017 Category: Pediatrics Authors: Lauren Ainsworth Tags: Diseases & Conditions Our Patients’ Stories gastroschisis multivisceral transplant Pediatric Transplant Center (PTC) Source Type: news

Julia Marino ’s Olympic story: Achieving after injury
Julia Marino is always thinking about her story, and it would be hard not too, given how much of an adventure her life has been so far. “Being adopted out of Paraguay to have a normal life in America would’ve been enough of a story itself,” she says. “But I’ve had the chance to live a life beyond what anybody could even dream of.” As an Olympic skier, Julia has been competing at the top of her sport for almost a decade. In 2014, she reached the pinnacle of snow sports at the Winter Olympics in Sochi, Russia. But how she got there – and where she plans on going now – was heavily influenced by a devastating k...
Source: Thrive, Children's Hospital Boston - November 27, 2017 Category: Pediatrics Authors: Connor Ertz Tags: Our Patients’ Stories ACL injury ACL injury prevention ACL reconstruction ACL tear Dr. Martha Murray Sports Medicine Division Source Type: news

Chocolate chip cookies, bike rides and hugs: Why I am thankful for Mommy
Four-year-old Lotte is an aspiring artist and writer. When she was 10 months old, she was treated for vesicoureteral reflux (VUR) at Boston Children’s Hospital. Here Lotte pens her first blog post to share why she is thankful for her Mommy. To: Mommy I am thankful for you because you drive me to school. You get me special treats. You have fun with me. You make me chocolate chip cookies. You read me stories. You go on bike rides with me. You give me big hugs. I love you, Mommy. Love, Lotte The post Chocolate chip cookies, bike rides and hugs: Why I am thankful for Mommy appeared first on Thriving Blog. (Source: T...
Source: Thrive, Children's Hospital Boston - November 23, 2017 Category: Pediatrics Authors: Lotte Bigelow Source Type: news

Teagan ’s triumphant return: Dancing after Perthes disease
Teagan has lived and breathed dance — ballet, jazz, tap, and more — since she was 5 years old. “It’s what makes me happy,” the now 12-year-old says. But two years ago, she started to feel pain in her hip that persisted after dance class and worsened over time. As her spring dance season wrapped up with four shows in two days, Teagan ended the final show with her pain at its worst. But since her injury didn’t seem to be anything more than a minor muscle pull, her mother Jeannine had Teagan lay low over the summer, hoping that rest would help the pain go away. When dance classes started again in September, her da...
Source: Thrive, Children's Hospital Boston - November 22, 2017 Category: Pediatrics Authors: Connor Ertz Tags: Our Patients’ Stories Child and Young Adult Hip Preservation Program Dr. Benjamin Shore Legg-Calves-Perth Disease Orthopedic Center Source Type: news

Supporting Latino families: The power of relationships
Cecilia and Sara Navigating a child’s medical journey can be difficult on any parent. But for a mother or father not familiar with the U.S. healthcare system or whose first language isn’t English, the journey is much more complex. Just ask one of the attendees at Fuente de Luz (“Fountain of Light”), the monthly informational group for Spanish-speaking families at Boston Children’s Hospital. On the first Tuesday of every month, around eight to ten Latino mothers — and occasionally fathers — get together to share their experiences and receive support from each other. There are hands to pass tissues and hold...
Source: Thrive, Children's Hospital Boston - November 21, 2017 Category: Pediatrics Authors: Nicole Nover Tags: Parenting Source Type: news

Cadagan: Humor and tenacity after a stroke
Most parents try to discourage their children from indulging in humor about bodily functions like burping. But for Daniel and Lori Hooley, a simple smirk in response to a belch was the sign they needed that their daughter, Cadagan, was going to be okay. It was 2012 and 7-year-old Cadagan was asleep, tucked into bed for the night. Around 11 p.m., she suddenly awoke — but it wasn’t because of a nightmare or a late-night request for a glass of water. Instead, she seemed limp and couldn’t focus. Then she began throwing up. Born with an extremely rare genetic disorder called trisomy 12p, the little girl had already experi...
Source: Thrive, Children's Hospital Boston - November 20, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Diseases & Conditions Our Patients’ Stories Dr. Cameron Trenor Dr. Laura Lehman Dr. Michael Rivkin stroke Stroke and Cerebrovascular Center vasculitis Source Type: news

Code talker: A Q & A with genetic counselor Kira Dies
Your child has just been diagnosed with a rare genetic disorder. Your pediatrician has never heard of the condition and the internet doesn’t offer much information. Where do you turn? Kira Dies, a genetic counselor in the Department of Neurology at Boston Children’s Hospital, helps parents with these hard questions every day. One of about only 4,000 genetic counselors in the country, Dies has been trained in handling both the scientific and emotional sides of genetic disorders. Dies was also the recent winner of the Code Talker Award, presented by Genome Magazine and the National Society of Genetic Counselors (NSGC). T...
Source: Thrive, Children's Hospital Boston - November 17, 2017 Category: Pediatrics Authors: Ellen Greenlaw Tags: Ask the Expert genetic counselor Kira Dies Mustafa Sahin Neurogenetics Program SPG47 tuberous sclerosis complex tuberous sclerosis program Source Type: news

Inside the NICU: Shining light on the healing power of touch
Abigail underwent open-heart surgery and received care in Boston Children’s Cardiac Intensive Care Unit Traveling through Boston Children’s Neonatal Intensive Care Unit (NICU), you feel the warmth of natural light and a soothing sense of calm. One mom, leaning delicately over her son’s bedside, caresses his forehead and gently whispers a lullaby. Only a few steps away, a father rests in a chair with his tiny son on his chest. Lifesaving technology fills the 24-bed NICU and a reassuring team of specialized physicians, nurses and Child Life Specialists monitor, treat and embrace their delicate patients. Nearly 15 m...
Source: Thrive, Children's Hospital Boston - November 16, 2017 Category: Pediatrics Authors: Maureen McCarthy Tags: Our Patients’ Stories neonatal intensive care unit NICU Source Type: news

Danny ’s journey to a biventricular heart
The first hint that something wasn’t quite right with Danny Sanchez-Garcia’s heart came at his mom’s six-month prenatal visit. “There was a little blip on the ultrasound, but then it was gone on the next one, so they didn’t think it was anything and I didn’t worry any more about it,” says Danny’s mom, Cynthia. Cynthia was overjoyed when Danny was born at her local hospital seeming perfectly healthy. But as the hospital staff monitored Danny overnight, they noticed his oxygen level was lower than normal and decided to run more tests. His doctors believed the tests pointed to a congenital heart defect called ...
Source: Thrive, Children's Hospital Boston - November 15, 2017 Category: Pediatrics Authors: Ellen Greenlaw Tags: Diseases & Conditions Our Patients’ Stories Biventricular Repair Complex Biventricular Repair Program congenital heart valve program double outlet right ventricle Dr. Christopher Baird Dr. Roger Breitbart ECMO Pulmonary atresia tetra Source Type: news

The healthy holiday guide for families
Holiday gatherings are for family, friends and … food. No matter which holidays you celebrate, they’re sure to include delicious treats — some healthy, most not. It may seem nearly impossible to always practice healthy eating habits, but there are some things you and your kids can do to stay on course this holiday season. Plan ahead Prepare healthy items for parties at home and for potlucks, bring your kids’ favorite vegetable dish or search online for “holiday vegetable and fruit platters.” There are lots of fun recipe ideas on Google and Pinterest, like a turkey-themed platter of veggies or ...
Source: Thrive, Children's Hospital Boston - November 14, 2017 Category: Pediatrics Authors: Amanda Rauf, Abigail Seibert and Sharon Weston Tags: Health & Wellness Optimal Weight for Life (OWL) Program Source Type: news

How precision medicine turned Jesus ’ unique tumor into an operable one
On a hot, August day in a Boston park, Jesus Apolinaris Cruz cooled off with a water squirt gun fight with his mother and sister. As he nimbly ran and dodged their aim, he twisted around to sneak shots of water back in their direction.  Peals of laughter rang out from the group as Jesus landed a jet of water on his sister. It’s hard to imagine that just weeks earlier, Jesus, 13, had undergone surgery near his hip to remove an unclassified tumor, so-described because it couldn’t be categorized as any specific kind of cancer. “We had been praying for months that the surgery would go well,” says Maria, Jesus’ mothe...
Source: Thrive, Children's Hospital Boston - November 13, 2017 Category: Pediatrics Authors: Kat J. McAlpine Tags: Our Patients’ Stories Research and Innovation Cancer clinical trials Dana-Farber/Boston Children's Dr. Katherine Janeway Dr. Steven DuBois Experimental Therapeutics Program pediatric cancer precision medicine sarcoma Solid Tumors C Source Type: news

Reena ’s story: A bright future with short bowel syndrome
She’s just 16, but Reena Zuckerman knows exactly what she wants to be doing in another 10 years. “My dream is to play on the press team in the annual Women’s Congressional Softball Game,” says the aspiring political journalist. Since 2009, the event has pitted members of Congress against the press corps, raising nearly a million dollars for charity. “When I’m not doing schoolwork or watching TV, I’m listening to political podcasts and NPR,” Reena confesses. It’s an impressive goal, but one that’s no doubt attainable for this driven teen, who’s been pushing herself to defy expectations since she was a ...
Source: Thrive, Children's Hospital Boston - November 10, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Diseases & Conditions Our Patients’ Stories Center for Advanced Intestinal Rehabilitation Dr. Tom Jaksic G-tube short bowel syndrome (SBS). volvulus Source Type: news

Why you should only use antibiotics if truly necessary
Let’s be honest: most parents feel better when their sick child is prescribed an antibiotic. There’s just something so reassuring about having a prescription. It’s hard to feel like all you can do is wait and give your child TLC; it feels better to do something. Even when the doctor says that your child has a virus, and explains that antibiotics treat bacteria, not viruses, it’s common for parents to think: but what if there is even a little chance that there is a bacterial infection along with — or instead of — the virus? It can’t hurt to be safe, right? But that’s the thing: it can hurt. Here are four way...
Source: Thrive, Children's Hospital Boston - November 9, 2017 Category: Pediatrics Authors: Claire McCarthy Tags: Ask the Expert Health & Wellness antibiotics Claire McCarthy MD Source Type: news

Police save lives every day, just not this way — a liver for Sloan
Sloane and Lt. Tenney A police officer’s job is all about action and reaction. “We see something, react to it and, typically, it’s over quickly,” says Lt. Steve Tenney of the Keene, New Hampshire, Police Department. But on the morning of Sept. 8, while Steve lay in a hospital bed at Lahey Hospital & Medical Center in Burlington, Massachusetts, action/reaction wasn’t part of the equation. This time, there was time to think. Even so, the decision to donate a piece of his liver to save Sloan — a baby he’d never even met — was made without hesitation. “I did what anyone would have done,” he says. Sloan ...
Source: Thrive, Children's Hospital Boston - November 8, 2017 Category: Pediatrics Authors: Emily Williams Tags: Diseases & Conditions Our Patients’ Stories biliary atresia Dr. Christine Lee Dr. Heung-Bae Kim Dr. Khashavar Vakili Liver transplant Liver Transplant Program living donor Source Type: news

Parent-to-parent: Tips for Home Parenteral Nutrition families
Four-year-old Thomas Onorato is a young zoologist at heart. Often seen with binoculars in hand, the adventurous preschooler is particularly drawn to bird watching. He enjoys talking about his feathery friends and studying their beauty and habitat. Thomas’ love of animals runs so deep that he says he wants to be a veterinarian when he grows up. “Thomas is obsessed with animals. It’s his love,” says his mother, Melissa. Beyond his quest to care for animals, Thomas has two other important missions — to manage the rare condition, microvillus inclusion disease (MVID) and receive the lifesaving parenteral nutrition...
Source: Thrive, Children's Hospital Boston - November 7, 2017 Category: Pediatrics Authors: Maureen McCarthy Tags: Our Patients’ Stories Parenting Dr. Bram Raphael home parenteral nutrition Microvillus inclusion disease Source Type: news