Seeing Phoenix
It seems like people have been looking at our son Phoenix — without seeing him, without talking to him — since before he was born. When I was pregnant and the ultrasound showed severe spina bifida and kyphosis (an excessive forward curve in his spine), the specialist told us he had never seen a spine like Phoenix’s. He wasn’t sure how it could be treated and recommended terminating my pregnancy. My husband Mike and I chose not to. Phoenix was born on June 29, 2009, with a lesion at the base of his spine. His spinal cord and nerves were exposed, so his first surgery was a skin graft to cover the lesion. On top of sp...
Source: Thrive, Children's Hospital Boston - October 3, 2016 Category: Pediatrics Authors: Megan Reuwer Tags: Our Patients’ Stories clubfoot Dr. Benjamin Warf Dr. Lawrence Karlin Dr. Nedda Hobbs Hydrocephalus kyphosis spina bifida Spina Bifida Clinic Source Type: news

The new frontier: Improving safety of outpatient care done at home
After Lacey Martin’s leukemia didn’t respond to initial rounds of chemotherapy and after she spent 10 weeks hospitalized for a stem cell transplant, the 11-year-old New Hampshire girl went home March 2 with an external line for medications that her mother would have to flush and clean twice a day. Lacey’s immune system and infection-fighting ability were so weakened from her treatment that she was under isolation precautions for six months after she left the hospital. Any bloodstream infection contracted through the line, which exited her chest, would be serious and potentially life-threatening. It is terrifying know...
Source: Thrive, Children's Hospital Boston - September 29, 2016 Category: Pediatrics Authors: Irene Sege Tags: Our Patients’ Stories Research and Innovation central line care central-line-associated bloodstream infection Dana-Farber/Boston Children's Cancer and Blood Disorders Center Dr. Amy Billett Dr. Chris Wong leukemia stem cell transplant Source Type: news

Celiac disease: 5 things parents need to know
Dr. Dascha Weir, associate director, Boston Children’s Celiac Disease Program It may be difficult for parents to hear that their child has a chronic illness. When the diagnosis is celiac disease (CD), an autoimmune disorder caused by an intolerance to gluten, there is good news. CD is treatable by changes in diet. How it works: When food enters the stomach, it’s broken down into tiny digestible particles, which then travel through the small intestine. The small intestine is lined with villi — tiny finger-like projections that absorb nutrients from the food passing through. In celiac disease, gluten, which is a pro...
Source: Thrive, Children's Hospital Boston - September 28, 2016 Category: Pediatrics Authors: Maureen McCarthy Tags: Diseases & Conditions celiac disease Dr. Dascha Weir gluten intolerance Source Type: news

Kids and the flu shot: What parents need to know
The time for flu shots has arrived. Many parents have questions about whether or not their child needs a shot, which vaccine to get and where to get it. Primary care providers at Boston Children’s Hospital have answers to questions about the flu shot and can help make it easier for parents to get their children vaccinated. Does my child need a flu shot? Yes. The American Academy of Pediatric and the Centers for Disease Control and Prevention strongly recommend annual flu vaccine for children and teens ages 6 months and older. Young children are at high risk for complications of flu, including pneumonia. My child is afrai...
Source: Thrive, Children's Hospital Boston - September 26, 2016 Category: Pediatrics Authors: Boston Children's Hospital staff Tags: Ask the Expert Health & Wellness flu primary care Source Type: news

Teaghan swims through leukemia treatment
Holding hands, 3-year-old Teaghan Bresnahan and her mom run the length of the lake-front dock. At the dock’s end, Teaghan lets go — and gleefully leaps into the air to land in the water with a satisfying splash. It may seem a typical summer scene. But for Teaghan, who has been in treatment for acute lymphoblastic leukemia for over a year, it’s particularly poignant. This type of leukemia usually requires two years of treatment. With the first year of more intense therapy now behind her, Teaghan is feeling better and getting a bit more swim time this summer. Teaghan had always been healthy — in her first two years...
Source: Thrive, Children's Hospital Boston - September 22, 2016 Category: Pediatrics Authors: Linda Watts Tags: Our Patients’ Stories Acute Lymphoblastic Leukemia Dana-Farber/Boston Children's Cancer and Blood Disorders Center Source Type: news

Play ball: Back on the field after catcher ’s knee
Brian Burke, a rising senior at Curry College, has been playing baseball for as long as he can remember. He loves his sport and hopes to have a shot at the pros after graduation. It’s a far cry from where he thought he would be four years ago when he had surgery for osteochondritis dissecans (OCD) in his right knee. With OCD, blood supply to the knee is restricted, damaging the bone and cartilage, and sometimes causing a piece of bone and cartilage to separate. The condition can increase an athlete’s risk for early arthritis. “When I first heard that I needed surgery, I though my career was over,” recalls Brian. It...
Source: Thrive, Children's Hospital Boston - September 19, 2016 Category: Pediatrics Authors: Lisa Fratt Tags: Our Patients’ Stories Research and Innovation Dr. Mininder Kocher Dr. Yi-Meng Yen Orthopedic Center osteochondritis dissecans Sports Medicine Source Type: news

Carter is more than you see
More than 50 feet above ground, a wire rope extends from one tree to another. High in the trees, seven-year-old Carter Mock fearlessly steps off a platform and places first one foot, then the other, onto the wire. Holding tight to hanging ropes for balance, he navigates across the wire to the next tree. It’s an impressive feat for anyone, but for Carter it’s extra special. Just weeks earlier, he completed treatment for osteosarcoma (a bone cancer), and he now has a prosthetic bottom left leg and foot. Carter says navigating the wire rope is tricky, because he can’t feel the pressure of the rope below his prosthetic l...
Source: Thrive, Children's Hospital Boston - September 15, 2016 Category: Pediatrics Authors: Linda Watts Tags: Our Patients’ Stories Dr. Mark Gephardt osteosarcoma rotationplasty Source Type: news

My life after concussion: Finding a new game
Esther playing soccer before her concussion and practicing her golfswing after her injury I am a 15-year-old rising high school junior. I suffered a severe concussion in April 2013 while playing soccer and continue to experience daily intermittent headaches, nausea, fatigue, dizziness and memory deficits. Before my concussion, I was an avid soccer player — I played on three teams including a competitive club team — and also played tennis, hockey, and skied. I definitely underestimated the severity of my concussion. I went to school the next day and was diagnosed when the baseline test at school revealed red flags. Stil...
Source: Thrive, Children's Hospital Boston - September 14, 2016 Category: Pediatrics Authors: Esther Lovett Tags: Kids' Safety Our Patients’ Stories Brain Injury Center concussion Dr. Alex Taylor Dr. Michael O'brien sports concussion Source Type: news

Two-year-old twin makes history after receiving hospital ’s 300th heart transplant
The cookies for Dean Andersen’s welcome-home celebration were decorated with “#300,” fitting for the two-year-old who, just six weeks earlier, received the 300th heart transplant performed at Boston Children’s Hospital. “Dean does things in his own time and in his own way,” says his mom, Janet Andersen. “His transplant was no exception.” The Boston Children’s Heart Transplant Program performed its first transplant in 1986, and this May marked the program’s 30th anniversary. Dean’s transplant in June was yet another reason for celebration. “Milestones like these are not accomplished without our a...
Source: Thrive, Children's Hospital Boston - September 13, 2016 Category: Pediatrics Authors: Emily Williams Tags: Our Patients’ Stories congenital heart defect Dr. Elizabeth Blume heart failure heart transplant Heart transplant program Pediatric Transplant Center (PTC) Pulmonary atresia Source Type: news

Experience Journal: Growing up with inflammatory bowel disease (IBD)
Roughly 1.4 million Americans suffer from inflammatory bowel disease (IBD), which refers to conditions that cause inflammation of the intestinal tract. Children with IBD may suffer from abdominal pain, cramping, blood in the stools and diarrhea. Early signs may include fever, fatigue and weight loss. IBD presents in two main forms: ulcerative colitis and Crohn’s disease. While both are lifelong conditions, they can often be treated effectively with regular medication and diet management, surgical care and psychological support. The IBD Experience Journal, created by the Boston Children’s Hospital Inflammatory Bo...
Source: Thrive, Children's Hospital Boston - September 12, 2016 Category: Pediatrics Authors: Erin Horan Tags: Diseases & Conditions Our Patients’ Stories Crohn's disease Experience Journal Inflammatory Bowel Disease Inflammatory Bowel Disease Center ulcerative colitis Source Type: news

Dylan discovers a new sport during cancer treatment
Balloons of various colors are taped in a row across the wall. Twenty yards away, 8-year-old Dylan Berio announces “yellow,” pulls back the string of his bow, then releases — smiling as he hears the pop. His arrow successfully pierced the yellow balloon. Archery requires focus and precision — something Dylan has in ample quantities. That would be impressive in its own right, but it’s even more remarkable given that he’s been on and off chemotherapy since age 3 ½ to treat pilocytic astrocytomas (brain tumors). As a result of the tumors, he lost most of the vision in one eye, and he needs glasses for both eyes. ...
Source: Thrive, Children's Hospital Boston - September 8, 2016 Category: Pediatrics Authors: Linda Watts Tags: Our Patients’ Stories Brain tumor Cancer Dana-Farber/Boston Children's Cancer and Blood Disorders Center Source Type: news

After three heart surgeries, baby Madison spreads smiles, strength and hope
It was just after midnight on an unseasonably warm Christmas Eve when Morre and Marcus stepped off the plane at Logan Airport. They carried precious cargo: their newborn daughter Madison needed emergency heart surgery at Boston Children’s Hospital. Madison was the couple’s first child. Like most expectant parents, Morre and Marcus were overwhelmed with joyous anticipation as the pregnancy progressed. They decorated their baby’s nursery and picked out a name: Madison, which means “gift from God.” But at Morre’s 20-week ultrasound, the couple’s joy was tempered by some troubling news. Madison had complex congen...
Source: Thrive, Children's Hospital Boston - September 7, 2016 Category: Pediatrics Authors: Erin Horan Tags: Our Patients’ Stories CHD congenital heart disease Dr. Aditya Kaza Dr. Gerry Marx Heart Center Melody valve Source Type: news

Back to school with food allergies
A back-to-school checklist for parents whose child has a food allergy can set the stage for a safe and happy school year. It’s important to focus on communication with key people, being sure to ask questions. If the answer is uncertain or unclear, continue to ask until it is clear. Read on to see what questions to ask. The school nurse Is there a full-time school nurse? If not, what is the protocol for managing reactions if a nurse is not available? Are school staff trained to recognize symptoms of an allergic emergency? Are they trained to respond? Who is trained? Are lunch and recess monitors trained? Who should be a...
Source: Thrive, Children's Hospital Boston - September 6, 2016 Category: Pediatrics Authors: John Lee Tags: Diseases & Conditions Health & Wellness Dr. John Lee food allergies Source Type: news

Dalton ’s legacy: Avery’s heart, Cheryl’s hope
Dalton Lawyer is forever 8. He’s a big brother. He’s a leader. And he’s a hero — an organ donor who’s saved four lives and provided hope to many, many more. Avery Toole is 12. She’s an only child — with three older brothers. Dalton and Avery’s lives intersected in 2009. Dalton was riding his bike, while on a family vacation. Avery, 5, was at Boston Children’s Hospital, her life hanging in the balance. She had been on the transplant list, waiting for a heart for 52 days. Dalton was struck by a truck. One week after the accident, Dr. Elizabeth Blume, medical director of the Boston Children’s Heart Trans...
Source: Thrive, Children's Hospital Boston - September 1, 2016 Category: Pediatrics Authors: Lisa Fratt Tags: Our Patients’ Stories Research and Innovation Dr. Elizabeth Blume Heart transplant program hypoplastic left heart syndrome NICU Source Type: news

Cancer or no cancer — Carlie will sing!
Her voice at first sings softly, then gradually gains intensity and rises to a crescendo as she belts out the refrain of a tune she and her dad co-wrote: “You’re not standing alone!” Fifteen-year-old Carlie Gonzalez has been singing and making music for as long as she can remember. But these days singing has new meaning. After eight months of intensive treatment for Ewing sarcoma, a type of bone cancer, her powerful voice is also a symbol of her physical and emotional strength. Three weeks after school started in September 2015, Carlie began to feel a pain in her collarbone. Since she also played volleyball, when an ...
Source: Thrive, Children's Hospital Boston - September 1, 2016 Category: Pediatrics Authors: Linda Watts Tags: Our Patients’ Stories Dana-Farber/Boston Children's Cancer and Blood Disorders Center Ewing Sarcoma Source Type: news