Down syndrome: Reimagining what ’s possible
Photo credit: Nicole Starr
I first met Ella Gray Cullen in the Advanced Fetal Care Center (AFCC) of Boston Children’s Hospital, shortly after she had received a prenatal diagnosis of Down syndrome. Like many parents expecting babies with conditions that can be diagnosed prenatally, she wanted to know more.
We talked about the additional medical screenings that would be recommended for her daughter to evaluate for cardiac defects and other conditions that are more common in children with Down syndrome. We discussed the developmental supports through Early Intervention and school that would be available to help her daughte...
Source: Thrive, Children's Hospital Boston - August 16, 2017 Category: Pediatrics Authors: Dr. Emily Jean Davidson Tags: Our Patients’ Stories Parenting Advanced Fetal Care Center Breastfeeding Down syndrome Emily Davidson Source Type: news
Cavernous malformations: What parents need to know
They’re among the more common cerebrovascular problems in kids. But few parents have heard of cavernous malformations until their own child is diagnosed. These small masses are comprised of abnormal, thin-walled blood vessels. While they can occur anywhere in the body, they’re most likely to cause problems when they form in the brain and spinal cord.
“Many different types of abnormal blood vessels can exist in the brain, but what makes cavernous malformations different is that they’re usually made up of very-low-flow blood vessels,” explains Dr. Edward Smith, co-director of the Cerebrovascular Surgery and Interve...
Source: Thrive, Children's Hospital Boston - August 15, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Ask the Expert Diseases & Conditions cavernous malformations Cerebrovascular Surgery and Interventions Center Dr. Edward Smith Source Type: news
A biventricular repair for Jayce ’s one-of-a-kind heart
Amanda Mattioli was working in Afghanistan as a government contractor and had just completed a whirlwind round of travel to three separate continents when she learned she was pregnant.
The helicopter unit that took her back to the main base so she could return home for her pregnancy gave her a unit sticker to commemorate her baby’s first helicopter ride. Little did she know it would also mark the beginning of a much longer journey for her and her son, William “Jayce” James.
Amanda got her first hint the ride would be bumpy at her 20-week ultrasound, when she learned Jayce’s heart was on the right side of his chest,...
Source: Thrive, Children's Hospital Boston - August 14, 2017 Category: Pediatrics Authors: Ellen Greenlaw Tags: Diseases & Conditions Our Patients’ Stories atrioventricular canal Biventricular Repair Biventricular Repair Program Dr. Gerald Marx Dr. Pedro del Nido Heterotaxy syndrome Pulmonary atresia transposition of the great arteries Source Type: news
The tube, the team and the family that give life
As 2-year-old Naema Alshehhi turns the pages of her favorite book, her eyes glimmer with curiosity. Sitting with her father, Àbdulla and big sister, Dana, in their temporary Boston apartment, the inquisitive toddler points to a number of shapes and is fascinated by the rainbow of color.
During this quiet moment, you see the gentle outline of Naema’s central line through her tiny shirt. The lifesaving tube — surgically inserted into her chest — provides the nourishment needed to manage the rare intestinal disorder she was born with, called microvillus inclusion disease (MVID). The condition, which causes ...
Source: Thrive, Children's Hospital Boston - August 11, 2017 Category: Pediatrics Authors: Maureen McCarthy Tags: Diseases & Conditions Our Patients’ Stories Dr. Alexandra Carey Dr. Bram Raphael Dr. Rima Fawaz home parenteral nutrition micorvillus inclusion disease multivisceral transplant Source Type: news
Does your child have narcolepsy?
Teens are a notoriously sleepy bunch. Left to their own devices, many will happily snooze into the early hours of the afternoon. About 28 percent of teens also report falling asleep in school at least once a week, according to a poll by the National Sleep Foundation. This can make it difficult for parents to know when a teenager’s love affair with sleep might be the sign of narcolepsy or another sleep disorder.
While narcolepsy is a rare condition, affecting only about .05 percent of the U.S. population, it often goes undiagnosed. It is a condition that typically develops between ages 10 and 20.
“Patients with narcolep...
Source: Thrive, Children's Hospital Boston - August 10, 2017 Category: Pediatrics Authors: Ellen Greenlaw Tags: Diseases & Conditions Center for Pediatric Sleep Disorders Dr. Kiran Maski insomnia Narcolepsy Source Type: news
Printing a plan to resolve an athlete ’s pain
Just days away from a complex hip surgery, Louise Atadja smiles and laughs. “I’m not really nervous at all. I feel like it’s the next thing on my to-do list, like we’re just checking off a box,” she says. “That’s the type of person I am — I make lists of what I have to do, so that’s how I’m thinking about it.”
I trust God, I trust Dr. Matheney, and I trust the procedure. I know it’s all going to be just fine.
Competing through pain
As a track star in high school and college, Louise was always playing through the pain — which mostly seemed to come from her knees. She decided to visit a doctor duri...
Source: Thrive, Children's Hospital Boston - August 9, 2017 Category: Pediatrics Authors: Connor Ertz Tags: Diseases & Conditions Our Patients’ Stories (PAO) surgery Child and Young Adult Hip Preservation Program Dr. Travis Matheney FAI femoral acetabular impingement hip dysplasia Source Type: news
Pushing past the pain: Morgan ’s journey with spina bifida
“Be glad you can use your legs now. You might not always be able to.”
That’s what Morgan Gautreau was told by a neurosurgeon in Alabama six years ago, one of many doctors she had seen seeking a solution for her nearly constant back pain caused by a tethered spinal cord due to spina bifida occulta.
Luckily, she and her family didn’t take his words to heart, but kept looking for help.
Early surgeries
Morgan’s journey with back pain began when she was in fourth grade. “I was at a Louisiana State University game and I realized my back was hurting. It just came out of the blue,” Morgan explains. “It hurt for a ...
Source: Thrive, Children's Hospital Boston - August 8, 2017 Category: Pediatrics Authors: Nicole Nover Tags: Diseases & Conditions Our Patients’ Stories Dr. Bartley Cilento Dr. Benjamin Warf Dr. Carlos Estrada Dr. Michelle Baum neonatal and congenital anomaly neurosurgery spina bifida Spina Bifida Center Spina Bifida Clinic tethered cord Source Type: news
Tackling bedwetting: ‘Don’t be afraid to talk about it’
Bedwetting, otherwise known as urinary incontinence or enuresis, is fairly common, often embarrassing and sometimes difficult to talk about. It is estimated that about 20 percent of boys and 17 percent of girls, ages 6 to 7 years old have some problem with daytime or nighttime wetting. Still, many kids are reluctant to talk about wetting with parents, friends and teachers. Parents themselves often have a hard time confronting the issue.
The Voiding Improvement Program (VIP) at Boston Children’s Hospital offers a comprehensive approach to bedwetting tailored to each child’s individual needs. “Our program is dri...
Source: Thrive, Children's Hospital Boston - August 7, 2017 Category: Pediatrics Authors: Maureen McCarthy Tags: Health & Wellness bedwetting Dr. Carlos Estrada enuresis Pamela Kelly Voiding Improvement Program Source Type: news
Ten reasons to call the pediatrician about a cough
Every child gets a cough from time to time; there’s really no escaping them. It’s completely normal for children to catch several colds a year, especially if they are in daycare or go to school, and common allergies can cause a cough too.
Most of the time, it’s nothing to worry about. Most of the time, some rest, plenty of fluids, honey (for children over a year old) and some patience and TLC do the trick. But sometimes, it’s important to call the doctor. Here’s when you should worry about a cough:
1. Your child is having trouble breathing.
Signs of this include:
Breathing quickly
“Sucking in” around the ri...
Source: Thrive, Children's Hospital Boston - August 4, 2017 Category: Pediatrics Authors: Claire McCarthy Tags: Health & Wellness Claire McCarthy MD cough Source Type: news
Care for epilepsy gets Aaron back in the game
I had my first seizure when I was 10 years old and in fourth grade. We had been to a Celtics game the night before and I was just lying on the couch when I fell off and onto the floor. One of my brothers was in the room with me and called for my mom. It was really scary for all of us. About a week later, I had another seizure in my sleep, so my parents decided to take me to Boston Children’s Hospital to be evaluated.
Even though one of my aunts has epilepsy, it was still surprising to be diagnosed — we just weren’t expecting it. My doctors put me on medication and that seemed to manage the condition pretty well until...
Source: Thrive, Children's Hospital Boston - August 3, 2017 Category: Pediatrics Authors: Aaron Kenneally Tags: Diseases & Conditions Our Patients’ Stories Dr. Phillip Pearl epilepsy epilepsy center seizures Source Type: news
Learning to listen: A journey with deafness
Before her son’s first birthday, Xi began to worry that something was wrong. “Bosyn was only around a year old, but I could tell he was very distracted — he wouldn’t look up when a phone rang or when a character in a movie yelled,” recalls Xi. “He would respond more to bright lights or colors than to sounds.”
The nine months following his second birthday were filled with appointments, inconclusive hearing tests and pediatricians dismissing Xi’s worries because she was a first-time parent.
But Xi couldn’t shake the feeling that something was wrong.
The family decided to travel from their hometown in upstat...
Source: Thrive, Children's Hospital Boston - August 2, 2017 Category: Pediatrics Authors: Andrea Vega Tags: Our Patients’ Stories Deaf and Hard of Hearing Program Dr Jennifer Johnston Margaret Kenna Otolaryngology Department Terrell Clark Source Type: news
Eating well and feeling good, family-style
It’s well known that childhood obesity is a problem in the U.S. But did you know that by the time they enter kindergarten, 12.4% of American children are already obese, and 14.9% are overweight?
It’s never too early to think about healthy eating.
The Optimal Weight for Life (OWL) Program is a multidisciplinary clinic at Boston Children’s Hospital, dedicated to treating children who are overweight or obese, and those with or at risk for type 2 diabetes.
Read more from OWL staff: A parent’s guide to healthy weight loss in children
When it comes to a healthy diet — whether you are making new changes or trying t...
Source: Thrive, Children's Hospital Boston - August 1, 2017 Category: Pediatrics Authors: Abigail Seibert, Ph.D. and Sharon Weston, MS, RD Tags: Health & Wellness diabetes obesity Optimal Weight for Life (OWL) Program Source Type: news
Experience Journal: A bereaved mother ’s lessons from the heart
Jessica Lindberg’s son Ethan was a brave heart warrior whose journey at Boston Children’s Hospital began before he was even born. At 20 weeks, they learned he had aortic stenosis and evolving hypoplastic left heart syndrome (HLHS). At 22 weeks Ethan was the 30th baby to have an in-utero procedure to open his aortic valve and relieve pressure in the left side of his heart.
By the time Ethan was 2, he’d had four open-heart surgeries. He was also having feeding problems, developmental delays, and was struggling with executive functioning and spatial tasks. Like many other parents of children with congenital heart defec...
Source: Thrive, Children's Hospital Boston - July 27, 2017 Category: Pediatrics Authors: Ellen Greenlaw Tags: Diseases & Conditions Our Patients’ Stories Cardiac Neurodevelopmental Program congenital heart defect Dr. Janice Ware Experience Journal Heart Center hypoplastic left heart syndrome Source Type: news
Six tips for talking with your child about cleft lip or palate
Having a facial difference such as cleft lip or palate can be difficult for any child, but it’s especially challenging when they’re about to enter a new social situation like going to school. For some parents, this time is even more stressful than it is for children. In fact, many of the parents whom I meet in the Cleft and Craniofacial Center at Boston Children’s Hospital tell me that having discussions with their child about the cleft is the number-one concern.
Ideally, you’ll start talking with your child about school or other social situations well in advance. Remember, family is our first real social experie...
Source: Thrive, Children's Hospital Boston - July 26, 2017 Category: Pediatrics Authors: Amanda Lasssiter Tags: Ask the Expert Diseases & Conditions Amanda Lassiter back to school health Cleft and Craniofacial Center cleft lip and palate Source Type: news
Saving Vanessa, part 1: A mystery rash, a stroke and an epic rescue
Vanessa’s rash first appeared on her arms and legs when she 3 or 4 months old. It was red and bumpy and went away when she was sick with a virus, which happened often. Then it would come back. The dermatology team she saw at Boston Children’s Hospital was puzzled.
“I was expecting they were going to think it was nothing, but they took it very seriously,” says Katherine Bell, one of Vanessa’s mothers. “They took a biopsy and very quickly realized they had no idea what it was.”
Vanessa’s case was even featured at a regional dermatology conference where doctors take up mystery patients. “A hundred to 150 der...
Source: Thrive, Children's Hospital Boston - July 25, 2017 Category: Pediatrics Authors: Nancy Fliesler Tags: Diseases & Conditions Our Patients’ Stories Dr. Carolyn Rogers Dr. Pui Lee Dr. Robert Sundel Dr. Scellig Stone Dr. Todd Lyons stroke Source Type: news
