Remembering Aidan 20 years later
My son died 20 years ago last month. We did our remembrance of him on his birthday earlier in the month, and that brought various condolences from various people. We are so sorry, they said. It must be so sad. Although the condolences came from kindness, they felt off somehow. It’s not so much about sadness anymore. After 20 years, it’s different. While Aidan was still alive, after he was diagnosed with a severe, life-limiting disability, I wrote something for Sesame Street Parents Magazine that our priest read at Aidan’s funeral: All of us, at some point in our lives, are faced with something we didn’t expect and...
Source: Thrive, Children's Hospital Boston - November 7, 2016 Category: Pediatrics Authors: Claire McCarthy Tags: Parenting Dr. Claire McCarthy Source Type: news

The many adventures of Wesley: Specialty care helps toddler with heart disease reach neurodevelopmental milestones
Will and Alicia Ethridge knew their unborn son would need complex open-heart surgery soon after birth, due to a serious congenital defect that was detected in utero. Wesley suffered from a genetic form of cardiomyopathy, which meant the walls of his heart muscles were thickened, and blood flow to the left side of his body was restricted. The knowledge about their son’s disease prepared them for many things about the impending medical journey (including arranging for cardiac surgery at the Boston Children’s Hospital Heart Center, just a few hours’ drive from their home in Maine) but there were many more things ab...
Source: Thrive, Children's Hospital Boston - November 3, 2016 Category: Pediatrics Authors: Erin Horan Tags: Our Patients’ Stories Cardiac Neurodevelopmental Program Dr. Caitlin Rollins Dr. Samantha Butler Heart Center Source Type: news

One mother ’s story: The most powerful lesson
There he was. My 5-month old precious baby boy lying lifeless on a stretcher after being diagnosed with a brain tumor. It was an absolute nightmare. My body switched into autopilot, and all the moments ran together in a chaotic group of memories that I can’t create a timeline for. Somewhere between complete desperation to find the answers and an overwhelming, powerful love I had for this child, I had the courage to stand up and be the demanding mother I always criticized. And you know what happened? It saved our son’s life. My advice comes from the experience of desperately dragging our son from one medical provider to...
Source: Thrive, Children's Hospital Boston - November 1, 2016 Category: Pediatrics Authors: Sarah Muoio Tags: Our Patients’ Stories Parenting Brain tumor Dana-Farber/Boston Children's Cancer and Blood Disorders Center Department of Neurology Source Type: news

Superheroes, super kids in super costumes don ’t let cancer stop Halloween
Children from the Jimmy Fund Clinic and their families trick or treat through Dana Farber. Photo courtesy of Sydney Altschuler. Abby Roxo likes to be unique on Halloween, and today she had unique totally covered. The 9-year-old from Shrewsbury, Massachusetts, arrived at the outpatient clinic of Dana-Farber/Boston Children’s Cancer and Blood Disorders Center ready for the annual Halloween parade. Wearing a feathery white halo, white shirt and white pants with large black spots, Abby, who made her costume with the help of her sisters, also drew black spots on her cheeks and wore bright red lipstick. What was she? ...
Source: Thrive, Children's Hospital Boston - October 31, 2016 Category: Pediatrics Authors: Irene Sege Tags: Our Patients’ Stories Dana-Farber/Boston Children's Cancer and Blood Disorders Center Halloween leukemia low-grade glioma Source Type: news

Doctor-patient friendship helps make an upside-down world right
Seven-year-old Jacob Downing has a list of caregivers as long as his “different” right arm. On top on the list is a be-spectacled, bow-tie-wearing neurologist. Dr. Michael Rivkin is co-director of the Boston Children’s Hospital Stroke and Cerebrovascular Center and the first person Jacob remembers seeing after the emergency surgery he underwent following a stroke. Jacob doesn’t remember the surgery to clear the blood clot that caused his stroke. “Dr. [Darren] Orbach worked a miracle for him,” says Jacob’s mother Nichole. Orbach is the neurointerventionalist who performed the endovascular thrombectomy procedur...
Source: Thrive, Children's Hospital Boston - October 27, 2016 Category: Pediatrics Authors: Lisa Fratt Tags: Our Patients’ Stories Dr. Darren Orbach Dr. Michael Rivkin dystonia pediatric stroke Stroke and Cerebrovascular Center Source Type: news

What if my child is a bully? A parent ’s guide to end the bullying
It’s a busy day at work. Your phone rings, and the principal at your child’s school tells you your child is bullying other students. What do you do? Popular media tends to focus just on the children who are bullied. So, what about the children who are bullies? According to the U.S. Department of Health & Human Services, approximately 30 percent of young people admit to bullying others. Research also shows that bullies are at greater risk for delinquent behavior and may experience adverse physical and mental health consequences including poor academic achievement, depressive symptoms and more. Here are some tips to...
Source: Thrive, Children's Hospital Boston - October 25, 2016 Category: Pediatrics Authors: Jessica Tsai Tags: Kids' Safety Parenting Teen Health BACPAC bullying Dr. Jessica Tsai Source Type: news

Experience Journal: Self-cathing around friends and at school
Clean intermittent catheterization (CIC), sometimes called self-cathing, involves emptying the bladder using a thin tube called a catheter when children and adolescents are unable to empty their bladders completely on their own. Some of the reasons children and adolescents might need to self-catheterize are if they were born with abnormal anatomy, had an infection that affected their bladder function or suffered damage to the nerves connecting the bladder to the spinal cord and then to the brain. The Boston Children’s Hospital Department of Urology and the Department of Psychiatry created the Self-Cathing Experience J...
Source: Thrive, Children's Hospital Boston - October 24, 2016 Category: Pediatrics Authors: Boston Children's Hospital staff Tags: Our Patients’ Stories Experience Journal self-cathing Source Type: news

Dedicated Dad partners with doc to save daughter ’s sight
Five years ago, Dan Lee had planned a big outing with his newly adopted daughter Manisha Sapkota, a 14-year-old from Nepal. “I was excited to take her to see ‘Toy Story 3D’ — her first 3D movie,” recalls Dan. But Lee was puzzled by his daughter’s response when he asked her what she thought. “It was OK,” Manisha told her dad. A few months later, Manisha’s lukewarm response made more sense. During her first physical exam in the U.S. at the Boston Children’s Hospital Martha Eliot Health Center, the doctor suggested Manisha might have amblyopia, or “lazy eye,” in her left eye. “She told us she...
Source: Thrive, Children's Hospital Boston - October 19, 2016 Category: Pediatrics Authors: Lisa Fratt Tags: Our Patients’ Stories Amblyopia Dr. Amy Moy lazy eye Martha Eliot Health Center Source Type: news

Young actor plays unexpected role
Before he was diagnosed with neuroblastoma in 2014 at the age of 11, Noah Smith was a veteran of the children’s theater stage. The suburban Boston boy had been cast in ensembles. He’d played Kurt Von Trapp in “The Sound of Music.” Little did Noah know that he would soon star in a video designed to allay the fears of children facing radioactive medication delivered intravenously in a lead-lined room where they’d live, under restrictions, for a week. After he received the medication, his parents would only be able to visit him one at a time, standing behind a lead shield and unable to touch him. Nurses would limit ...
Source: Thrive, Children's Hospital Boston - October 18, 2016 Category: Pediatrics Authors: Irene Sege Tags: Our Patients’ Stories chemotherapy Dana-Farber/Boston Children's Cancer and Blood Disorders Center immunotherapy MIBG neuroblastoma radiation stem cell transplant Source Type: news

Victoria perseveres: Knee surgery brings new possibilities
“Last can be better than first.  It can be bigger than anything when getting there wasn’t supposed to happen,” says Chris Voye, a few hours after his 12-year-old daughter Victoria’s first cross-country meet. Victoria fell in love with running six years earlier during a summer track program. She had hoped to participate the following summer, but began experiencing problems with her knees. “It started when I was in second grade,” recalls Victoria. She’d be running or jumping, and one of her kneecaps would slide to the side. She’d stumble and fall. The condition affected both knees. When she was 8, Victor...
Source: Thrive, Children's Hospital Boston - October 13, 2016 Category: Pediatrics Authors: Lisa Fratt Tags: Our Patients’ Stories Division of Sports Medicine Dr. Benton Heyworth Orthopedic Center Source Type: news

The closest of calls: Infant ’s DSM cured with life-saving brain procedure
Six-year-old Madelyn knows why she has to see a special team of doctors twice a year: she had brain surgery as a baby. But she doesn’t yet understand the full weight of the story. “She knows there was a problem with something in her brain, and she had to go to Boston for special care, where the doctors made it all better,” says her mother, Julie. “She knows the team still checks in on her to make sure she stays healthy.” As she gets older, Madelyn will be able to comprehend more and more. Someday she’ll realize not only just how lucky she is to be alive, but the incredible ordeal her parents went through when s...
Source: Thrive, Children's Hospital Boston - October 11, 2016 Category: Pediatrics Authors: Erin Horan Tags: brain center Department of Neurology Dr. Cameron Trenor Dr. Darren Orbach Dr. Michael Rivkin dural sinus malformation Source Type: news

A mom gives life twice with living-donor liver transplant
Dawn Cavanaugh carefully and calmly navigates the roads of Shrewsbury, Massachusetts, with a bus full of kids, bringing them to school and safely back home again at the end of each day. As a bus driver, it’s the methodical beat of her everyday life. Last year, as a mom, she was navigating a very different journey, one in which she did everything in her power — including giving a portion of her liver — to bring her daughter Lydia home safely. “As far as I’m concerned, my role in this life is to care for my kids,” says Dawn. “And if I have to give a part of myself to do that, that’s all there is to it...
Source: Thrive, Children's Hospital Boston - October 11, 2016 Category: Pediatrics Authors: Emily Williams Tags: Our Patients’ Stories biliary atresia Heung Bae Kim Khashayar Vakili Liver transplant Liver Transplant Program living donor Pediatric Transplant Center (PTC) Source Type: news

Father and son find unexpected connection
Matty Siegrist and his dad Tim share the same thick brown hair and ready smile. They also share a trait that’s not so visible — a mutation in the CCM3 gene that causes cavernous malformations, abnormal blood vessels that form in the brain and spinal cord. When these blood vessels leak, they can cause seizures, headaches and a host of other problems. A lively and high-spirited two-year-old, it’s hard to believe Matty recently had brain surgery or that before the surgery he was struggling to walk because his balance was so poor. Matty’s surgery, performed by neurosurgeon Dr. Edward Smith, of the Boston Children’s...
Source: Thrive, Children's Hospital Boston - October 10, 2016 Category: Pediatrics Authors: Ellen Greenlaw Tags: Our Patients’ Stories cavernous malformations Cerebrovascular Surgery and Interventions Center Dr. Edward Smith Second opinion Source Type: news

Samantha ’s story: Partnering with BACPAC program to end bullying
During the fifth grade when Samantha was 10 years old, she was bullied by a male classmate. She remembers walking through the halls of her elementary school and hearing the bully call out these words: “Why are you on this earth? You don’t deserve to be alive.” The bullying followed her every day. “I didn’t want to go to school because I knew he would be there. I was afraid,” says Samantha, now 12. Weeks into the school year, the harassment and intimidation escalated and turned physical. “It was usually mental [abuse], but at one point in fifth grade the bully came up to me, and he punched me on the back,...
Source: Thrive, Children's Hospital Boston - October 6, 2016 Category: Pediatrics Authors: Maureen McCarthy Tags: Our Patients’ Stories Teen Health ADHD autism bullying Bullying and Cyberbullying Prevention and Advocacy Collaborative Department of Neurology Learning disabilities Peter Raffalli Source Type: news

Families with Apert syndrome find similarities, not differences
Madilynn and her father Rocky For some families in the waiting room on the day of the Apert syndrome clinic, it’s a reunion. For others, it’s a revelation. Coming to Boston Children’s Hospital from as far away as China, some have never met another child with Apert syndrome. Before long, parents and kids of all ages and ethnicities are taking group selfies as the younger children run around and play. “These kids have the brightest smiles, they’re very resilient,” says Tambra Milot, mother of 3-year-old Madilynn. Each year, the clinic sees about 50 children with Apert syndrome, a rare genetic disorder in which th...
Source: Thrive, Children's Hospital Boston - October 4, 2016 Category: Pediatrics Authors: Nancy Fliesler Tags: Our Patients’ Stories apert syndrome Cleft and Craniofacial Center craniosynostosis Department of Plastic and Oral Surgery Dr. Amir Taghinia Dr. Brian Labow Dr. John Meara Dr. Mark Proctor Dr. Richard Bruun sleep apnea Source Type: news