Health care reform: ‘This is the time to act’
Sandra L. Fenwick, Boston Children’s Hospital President and CEO, far right, joins patients, families and staff at Family Advocacy Day in Washington, D.C., June 2016.
Since the new year began, we’ve been working hard to educate everyone — our employees, staff, volunteers, patients, families and friends — about what the conversation about health care in Washington D.C., means for children. We have very serious concerns about the possible impact that the efforts to quickly repeal the Affordable Care Act (ACA) could have on our patients and their families.
Many of you share our concerns and have demonstrated this t...
Source: Thrive, Children's Hospital Boston - June 30, 2017 Category: Pediatrics Authors: Amy DeLong Tags: In the News policy Source Type: news
Pulmonary vein stenosis: A clinical trial in Jack ’s juice glass
At just 6 months old, Jack Marquis was suddenly given four weeks to live. After he was born with complex congenital heart defects, Jack’s doctors in California had performed two open-heart surgeries that they thought would save Jack’s life.
But just when they thought he was out of the woods, Jack’s condition suddenly began to deteriorate rapidly.
“On top of everything else, we learned he had a rare condition called pulmonary vein stenosis,” says Jack’s father, Andrew.
Racing to treat pulmonary vein stenosis
Pulmonary vein stenosis causes narrowing of the veins that carry oxygen-rich blood from the lungs to the ...
Source: Thrive, Children's Hospital Boston - June 29, 2017 Category: Pediatrics Authors: Kat J. McAlpine Tags: Our Patients’ Stories Research and Innovation chemotherapy clinical trial Dana-Farber/Boston Children's Cancer and Blood Disorders Center Dr. Kathy Jenkins Dr. Mark Kieran Heart Center pulmonary vein stenosis Source Type: news
Two life-threatening conditions.One remarkable wish.
When Lucas St. Onge blew out the five candles on his birthday cake, he made just one wish. He didn’t ask for ninja turtles, a T-ball set or an Xbox — the only thing he wished was to be just like any other kid.
“It was a gift I couldn’t give,” says his mom, Heather.
On that same day, last May, he got his wish.
“He got a liver, stomach, pancreas, intestine and spleen — the five organs he needed to help him become healthy and happy,” Heather says.
Heather was 18 weeks pregnant when she and her husband, Anthony, learned they were about to face a myriad of medical challenges with their unborn child. To what ex...
Source: Thrive, Children's Hospital Boston - June 28, 2017 Category: Pediatrics Authors: Emily Williams Tags: Our Patients’ Stories bone marrow transplant Dana-Farber/Boston Children's Cancer and Blood Disorders Center Dr. Heung-Bae Kim Dr. Khashavar Vakili Dr. Rima Fawaz Intestine and Multivisceral Transplant Program Pediatric Transplant Center ( Source Type: news
Thank you for making Boston Children ’s #1
The 2017-18 U.S. News & World Report “Best Children’s Hospitals” rankings were released this morning, and Boston Children’s Hospital has been named the #1 children’s hospital in the nation.
The U.S. News rankings are about more than just reputation. They’re based on four key elements — reputation, patient outcomes, patient safety and care-related factors such as the amount of nurse staffing and the breadth of patient services. They rely most heavily on outcomes — in other words, were we able to make a difference?
At Boston Children’s, we care for patients with the most complex conditions ...
Source: Thrive, Children's Hospital Boston - June 27, 2017 Category: Pediatrics Authors: Sandra L. Fenwick, President and CEO Tags: In the News US News and World Report Source Type: news
A ‘superstar’ homecoming: Julia’s journey for bladder exstrophy care
Julia Ryan was born on March 2, but her journey to Boston Children’s Hospital began months before her birth.
During Tori Ryan’s pregnancy, doctors near her home in South Carolina diagnosed her unborn child, Julia, with bladder exstrophy, a rare and complex birth defect where the bladder develops inside out and is exposed outside of the body.
“There were a lot of tears,” says Tori’s husband, Sean, of receiving the news about their daughter. “It was hard. We had to balance our own worry with the excitement our two older daughters felt about having a little sister.”
Their concern for the...
Source: Thrive, Children's Hospital Boston - June 26, 2017 Category: Pediatrics Authors: Maureen McCarthy Tags: Our Patients’ Stories Advanced Fetal Care Center bladder exstrophy bladder exstrophy program Department of Urology Joseph Borer Source Type: news
A bond between sisters made stronger by scoliosis
Growing up, sisters will often share many things — and not always willingly. But it’s not often they will end up sharing the same condition, one that keeps them stuck in a rigid and uncomfortable back brace for most of the day. But then again, April and Mary Miller are not your average sisters.
The Miller sisters were both diagnosed with idiopathic scoliosis at the end of their fifth grade years. April, the oldest sister, was diagnosed in 2011, while younger sister Mary’s diagnosis came in 2013.
One diagnosis, two separate journeys
Scoliosis is relatively common, with idiopathic scoliosis being its most common for...
Source: Thrive, Children's Hospital Boston - June 26, 2017 Category: Pediatrics Authors: Connor Ertz Tags: Diseases & Conditions Our Patients’ Stories brace idiopathic scoliosis Michael Glotzbecker spinal fusion Spinal Program Source Type: news
Hope for Leonce: Kenyan boy ’s incredible journey with vein of Galen malformation
Boston is a long flight from Kenya — 22 hours long, in fact. That’s enough time to sleep, eat, read, watch countless YouTube videos and do it all over again, an experience that could make adults antsy, let alone two little boys. Yet it was a journey that Jane Nduta and Humphrey Njogu were eager to make.
Just a few months earlier, their younger son, Leonce, had been diagnosed with a rare but life-threatening condition called vein of Galen malformation, or VOGM. In this blood vessel abnormality, misshapen arteries in the brain connect directly with veins instead of with capillaries. This causes a rush of high-pressure bl...
Source: Thrive, Children's Hospital Boston - June 23, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Diseases & Conditions Our Patients’ Stories Cerebrovascular Surgery and Interventions Center Dr. Darren Orbach International Health Services vein of Galen malformation (VOGM) Source Type: news
6 questions answered about anxiety in children and teens
Between school and social demands, lots of children feel stress, but at what point does anxiety cross the line and become a mental health concern? Thriving sat down with Keneisha Sinclair-McBride, PhD, a clinical psychologist in the Department of Psychiatry at Boston Children’s, to better understand what separates serious forms of anxiety from normal worrying, whether seeing a therapist is warranted and how to handle anxiety at home.
My child is a “worrier.” What degree of anxiety is normal and what should cause me concern?
Occasional worries, like worries about the start of the school year or fitting in with peers,...
Source: Thrive, Children's Hospital Boston - June 21, 2017 Category: Pediatrics Authors: Nancy Fliesler Tags: Ask the Expert Mental Health Parenting anxiety Department of Psychiatry Keneisha Sinclair-McBride worrying Source Type: news
Experience Journal: ‘Heart defects won’t keep me from reaching my goals’
Emily Ryan was born with coarctation of the aorta and a ventricular septal defect (VSD). But these congenital heart defects have never kept her down. Even though she’s had a pacemaker since age 4, she’s always led an extremely active lifestyle.
Emily’s parents and her team of caregivers from the Heart Center at Boston Children’s Hospital have helped Emily understand her heart condition and have given her the confidence and encouragement to realize her full potential — both in the classroom and on the track.
Now a competitive Division 1 athlete and outdoor leader in college, Emily wants everyone to understand,...
Source: Thrive, Children's Hospital Boston - June 20, 2017 Category: Pediatrics Authors: Ellen Greenlaw Tags: Our Patients’ Stories coarctation of the aorta congenital heart defect Experience Journal Heart Center ventricular septal defect Source Type: news
Thank you from the bottom of my three-chambered heart
Austin hugging his father at the finish line of the 2017 Boston Marathon. Photo credit: Joseph Kelly
When people ask me what it was like to run the Boston Marathon, I don’t just think about the race itself. I think about about my entire life journey and all the people who helped get me to Boylston Street. Yes, the actual marathon day is one day in time that people can point to on a calendar, but it’s the long journey with all its ups and downs and the people you meet along the way, that makes it all worth it.
My journey has come full circle, as I went from my mom and I waiting for my dad at the finish line nineteen yea...
Source: Thrive, Children's Hospital Boston - June 17, 2017 Category: Pediatrics Authors: Austin Prario Tags: Diseases & Conditions Our Patients’ Stories congenital heart defect Dr. Audrey Marshall Dr. John Mayer Heart Center Source Type: news
Miles to go: From Mississippi to Boston for life-saving care
Whether he’s riding with his family on their all-terrain vehicle (ATV) at home in Mississippi, learning how to fish or playing with his cousins, Ethan Claborn is happiest when he’s outdoors. Simple things like a blade of grass or drop of rain are even more special for this almost four-year-old, considering he spent the first year of his life within hospital walls.
Ethan’s parents, Holly and Gary, knew even before he was born that he would face several health challenges. But it still felt like a shock when, not long after birth, he was rushed into surgery to treat an intestinal blockage. Diagnosed with ileal atresia, ...
Source: Thrive, Children's Hospital Boston - June 16, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Diseases & Conditions Our Patients’ Stories Center for Advanced Intestinal Rehabilitation Dr. Biren Modi Dr. Mark Puder ileal atresia Omegaven total parenteral nutrition Source Type: news
Blood relatives: Family bound by love and rare blood disorder
Tracy Antonelli was 4 when she was diagnosed with thalassemia, a rare blood disorder that occurs often enough in Mediterranean countries like Italy that an old adage, uttered only partially in jest, warns Italian-Americans against marrying other Italian-Americans.
In 2002, Tracy wed Patrick Mooty, whose background is mostly Irish. Their three daughters — 7-year-old Emmilene, 6-year-old Rosalie and 3-year-old Francesca — all have thalassemia, but not through the accident of the couple’s genetics. Tracy and Patrick adopted the girls from China, specifically because they, too, have the potentially life-threatening dis...
Source: Thrive, Children's Hospital Boston - June 15, 2017 Category: Pediatrics Authors: Irene Sege Tags: Diseases & Conditions Our Patients’ Stories adoption china Dana-Farber/Boston Children's Cancer and Blood Disorders Center Dr. Daniel Bauer thalassemia Source Type: news
Sharing biliary atresia — and strength to beat it
Everywhere Melissa Villaseñor goes her little sister, Isabella, follows.
The 6- and 2-year-olds share just about everything. They share big personalities. They share a love of being lively and loud. And, they also share something else — they were both born with biliary atresia.
“I am not going to lie,” says Andrea Torre, the girls’ mom. “I sometimes break down and cry and ask myself, ‘Why me?’”
Biliary atresia is a chronic, progressive liver condition that is fatal if left untreated. For most parents, having just one child with this rare, life-threatening disease is overwhelming.
“My husband keeps me...
Source: Thrive, Children's Hospital Boston - June 14, 2017 Category: Pediatrics Authors: Emily Williams Tags: Our Patients’ Stories biliary atresia Dr. Heung-Bae Kim Dr. Khashavar Vakili Liver transplant Liver Transplant Program Pediatric Transplant Center (PTC) Source Type: news
4 questions parents have about moyamoya disease
Last month, families from across the country gathered at Boston Children’s Hospital to celebrate World Moyamoya Day. The expert speakers at the Moyamoya Family Day Symposium shared the latest information about this rare but very serious condition with parents and patients alike.
Moyamoya disease occurs when the walls of the internal carotid arteries — the vessels that supply blood to important areas of the brain — become thickened and narrowed. As a result, blood flow to the brain slows, making blood clots more likely. Kids with moyamoya disease are at significantly higher risk of having a stroke, as well as other co...
Source: Thrive, Children's Hospital Boston - June 13, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Ask the Expert Diseases & Conditions Dr. Edward Smith moyamoya Moyamoya Disease Program Source Type: news
A happy return: Catching up with Eva
It’s about 2,400 miles from Salt Lake City to Boston. But it’s a distance Jennifer and Vincent Ramirez are more than happy to travel to get care for their daughter Eva. The family first traveled to Boston Children’s Hospital in January of 2016 for surgery to remove Eva’s encephalocele — a surgery her doctors in Utah had said wasn’t possible.
This spring, the family was back in Boston for a follow-up visit with the surgeons who performed her surgery, Dr. Mark Proctor, neurosurgeon-in-chief, and Dr. John Meara, plastic-surgeon-in-chief.
For this visit, Jennifer and Vincent had decided to bring along their two old...
Source: Thrive, Children's Hospital Boston - June 12, 2017 Category: Pediatrics Authors: Ellen Greenlaw Tags: Our Patients’ Stories Craniofacial Program Dr. John Meara Dr. Mark Proctor encephalocele Source Type: news
