Taking on the world: Lonnie Lu ’s experience with laryngeal cleft
Lonnie Lu and her mom at Boston Children’s Center for Airway Disorders.
Not every little girl gets a visit from a Disney princess on her birthday, but Lonnie Lu received just such a surprise when Princess Elena stopped by her party last month. Her admiration may go beyond a love of colorful dresses. Minus one evil sorceress and an enchanted kingdom, the character’s tale of strength and resilience might as well be Lonnie Lu’s story, too.
A mother’s intuition
Now age 4, Lonnie Lu came into her parents Patti and Ricardo’s lives at 7 months old, when the couple decided to foster her and her older sister, Maya. ...
Source: Thrive, Children's Hospital Boston - July 24, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Diseases & Conditions Our Patients’ Stories Center for Airway Disorders Dr. Reza Rahbar laryngeal cleft Source Type: news
A parent ’s guide to healthy weight loss in children
Today, up to 30 percent of children and adolescents are considered to be overweight or obese. This “obesity epidemic” is a source of great concern to parents and caregivers alike, as these kids face an increased risk of a host of serious medical and behavioral health complications, including type 2 diabetes.
We sat down with Dr. Robert Markowitz and dietitian Sharon Weston of the Boston Children’s Hospital Optimal Weight for Life (OWL) Program to help parents support their children in maintaining an optimal weight.
How do I know if my child is overweight or obese?
Markowitz: The best way to determine if a child is ...
Source: Thrive, Children's Hospital Boston - July 21, 2017 Category: Pediatrics Authors: Jenny Fernandez Tags: Ask the Expert Health & Wellness Optimal Weight for Life (OWL) Program Source Type: news
Taking my own advice: When the professional becomes a parent
As a disability expert, my whole career has been spent giving parents advice. I’ve given advice on parenting, doctors, child development, school and resources to support them. I was confident working with families and helping them navigate the often crazy and overwhelming world of special needs. But when I was 34 weeks pregnant with my own child, I found myself on the other side of the situation.
My husband and I learned that our son, Jack, would be born with a cleft palate and micrognathia, or an undeveloped lower jaw. The extent of these facial differences wouldn’t be known until he was born. We met with doctors from...
Source: Thrive, Children's Hospital Boston - July 20, 2017 Category: Pediatrics Authors: Jennifer Ryan Tags: Diseases & Conditions Our Patients’ Stories Cleft and Craniofacial Center cleft lip and palate Dr. Carolyn Rogers Dr. Cory Resnick Pierre Robin sequence Source Type: news
Nathaniel ’s heart: One for the record books
As 3-year-old Nathaniel Wesley nervously watched the big machine move toward his chest, he spotted a familiar face: It was the cartoon character Barney — in sticker form. “Give Barney a kiss!” his parents urged, and he smiled at the friendly purple dinosaur while the scanner took images of blood flow in his lungs.
Now 11, Nathaniel is no stranger to doctors, nurses or hospitals. Born with tetralogy of Fallot with pulmonary atresia — a severe congenital heart defect — he’s been a frequent visitor to the Heart Center at Boston Children’s Hospital for the past eight years. In this disorder, the heart and its val...
Source: Thrive, Children's Hospital Boston - July 19, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Diseases & Conditions Our Patients’ Stories Cardiac Neurodevelopmental Program Dr. David Brown Dr. Janice Ware Dr. John Mayer Dr. Naomi Gauthier Heart Center tetralogy of Fallot with pulmonary atresia Source Type: news
Seven lessons I ’ve learned from Rett syndrome
As a mother of a child with Rett syndrome, a disability that affects the brain’s ability to plan or coordinate motor skills, the phrase “take for granted” takes on a whole new meaning. I cannot take for granted that Ava can recite her A, B, C’s or feed herself a snack or go to the bathroom on her own. Quite the opposite. Every day, I strive to properly appreciate the effort it takes for Ava to perform the most mundane tasks. I am the one being “schooled” on Rett syndrome.
Here are seven of the things Rett syndrome has taught me:
1. Technology is seriously cool.
Ava doesn’t speak, but she can communicate. Sh...
Source: Thrive, Children's Hospital Boston - July 18, 2017 Category: Pediatrics Authors: Joanne Gryniewicz Tags: Our Patients’ Stories rett syndrome Source Type: news
Private Parts II: More things parents of boys need to know
While it can be uncomfortable for parents to talk about issues with their son’s private parts, abnormalities in the testicles and scrotum are common and treatable.
One of my favorite parts of my job is sitting down with anxious families and being able to make the uncomfortable comfortable for them. I hope I can do that for you here in this guide to the most common testicular abnormalities seen in young boys.
1. Undescended testicles
A baby boy should have two testicles down in the scrotum. The best time to examine your son is while he soaks in a warm bath. If you’re unable to see or feel both testicles, make an ...
Source: Thrive, Children's Hospital Boston - July 17, 2017 Category: Pediatrics Authors: Erin McNamara Tags: Ask the Expert Health & Wellness Department of Urology Erin McNamara Source Type: news
Getting and giving support for cleft lip and palate
Jack Dolan came into the world with a laugh. His mother, Erin, was mid-chuckle during labor when he was born — “a really joyful entrance,” she says. Looking down at her new son, she and her husband, Jimmy, breathed sighs of relief. “We took one look at him and thought, ‘He’s beautiful,’” she remembers. “We knew then that everything was going to be okay.”
It was a happy celebration after a pregnancy sometimes marked by stress and anxiety. During ultrasonography, Erin and Jimmy had learned that Jack would be born with a bilateral cleft lip and palate. Erin, a nurse practitioner, had noticed that the techn...
Source: Thrive, Children's Hospital Boston - July 13, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Diseases & Conditions Our Patients’ Stories Cleft and Craniofacial Center cleft lip and palate Dr. John Mulliken Olivia Oppel Source Type: news
A thank you from Gavin, the ‘biggest little fan’
My wife, Rebecca, and I are forever grateful for the compassionate care we received at Boston Children’s Hospital. This is our story — an emotional roller-coaster with a very happy ending.
In early March, our nanny Eida discovered a lump on the lower back of our infant son, Gavin.
As we began to see various doctors locally, we were told the lump was something common and benign, but we never got a solid diagnosis. Imaging was inconclusive and an oncologist told us over the phone, “I wish I could tell you this is benign, but at this point, I cannot.” One option presented to us was to remove the entire tumor without...
Source: Thrive, Children's Hospital Boston - July 12, 2017 Category: Pediatrics Authors: Matt Pickens Tags: Our Patients’ Stories Ahmad Alomari Christopher Weldon David Clendenin patient experience Source Type: news
An ocean away: Care for laryngeal cleft brings Clara to Boston
My husband, Duncan, and I were living in London, England, when Clara was born. Although my pregnancy had started out like any other, I later developed severe polyhydramnios, an accumulation of amniotic fluid that can sometimes indicate the presence of certain congenital issues.
After I delivered, it became clear that Clara had a congenital condition called esophageal atresia with tracheoesophageal fistula (EA/TEF). This condition meant that her esophagus (the tube that carries food from the mouth to the stomach) hadn’t developed properly and didn’t connect to her stomach, but that her esophagus and windpipe were improp...
Source: Thrive, Children's Hospital Boston - July 11, 2017 Category: Pediatrics Authors: Natascha Kiernan Tags: Diseases & Conditions Our Patients’ Stories Center for Airway Disorders Dr. Reza Rahbar laryngeal cleft Source Type: news
Our family ’s journey of the heart
When our son Nicholas was 5 weeks old, we brought him and his twin sister Emmy to our pediatrician for what we thought was a routine well visit. Though the twins had been born four weeks early, Nicholas had only been in the neonatal intensive care unit (NICU) for a few days with low blood sugar and jaundice. Both babies seemed healthy and we had no major concerns.
However, as we watched our pediatrician listen to Nicholas’ heart and pulse, we realized something wasn’t right. He told us the pulse in Nicholas’ lower extremities was weaker than the pulse in his upper body. He suspected Nicholas might have...
Source: Thrive, Children's Hospital Boston - July 10, 2017 Category: Pediatrics Authors: Liz Wilson Tags: Diseases & Conditions Our Patients’ Stories autism spectrum disorder Cardiac Neurodevelopmental Program coarctation of the aorta Dr. Anjali Sadhwani Dr. Caitlin Rollins Dr. Christopher Baird Dr. Samantha Butler Source Type: news
Finn ’s heart: A journey into the unknown
Three-year-old Finn stands in front of the full-length mirror in his parents’ room, with his shirt off. “Mommy, look how cool!” he shouts, placing his finger along the long scar running down the middle of his chest. “That’s where I had my heart surgeries!”
“That’s right, buddy,” Jenna replies, surprised because they’d never talked about his scars. “We always tell him he has a special heart. We don’t ever want him to feel different.”
Finn runs off to play.
It makes Jenna smile and sometimes cry to see her son so happy and full of life. Now 5 years old, Finn has had three open-heart surgeries to tre...
Source: Thrive, Children's Hospital Boston - July 7, 2017 Category: Pediatrics Authors: Jenny Fernandez Tags: Diseases & Conditions Our Patients’ Stories Christopher Baird complex congenital heart defect Heart Center hypoplastic left heart syndrome Wayne Tworetzky Source Type: news
5 things parents should know about eating disorders
Dr. Sara Forman, director of Boston Children’s Hospital’s Outpatient Eating Disorders Program and Dr. Tracy Richmond, director of the PREP weight management program in Adolescent Medicine, share five things parents should know about eating disorders.
Kids don’t have to be really thin to have an eating disorder.
Not everyone with an eating disorder looks like he or she has an eating disorder. The condition is often hidden in secret habits or obsessions. For example, binge eating and bulimia — or binging and purging — are common eating disorders not necessarily associated with thinness.
Eating diso...
Source: Thrive, Children's Hospital Boston - July 7, 2017 Category: Pediatrics Authors: Erin Horan Tags: Mental Health Teen Health anorexia anorexia nervosa bulimia Dr. Sara Forman Dr. Tracy Richmond eating disorder Source Type: news
Expert insight on cleft lip and palate
Learning that your baby has a cleft lip or palate can be upsetting, but these birth defects are quite common. They occur early in pregnancy when tissue from each side of the head grows together to form the face. If these tissues don’t completely join, the result is a cleft, or gap, on one or both sides of the upper lip. A cleft palate occurs when the tissue that forms the roof of the mouth doesn’t fully come together, leaving an opening between the mouth and nose.
It’s not clear what causes a cleft lip or palate, but a combination of genetic and environmental risk factors appears to be involved. “Although some form...
Source: Thrive, Children's Hospital Boston - July 6, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Ask the Expert Diseases & Conditions Cleft and Craniofacial Center cleft lip Cleft lip and Palate Program cleft palate Dr. Ingrid Ganske Source Type: news
A diagnosis of dysautonomia sheds new light on Sarah ’s pain
Sarah Fishman exudes vivaciousness and warmth. When describing her favorite activities, mainly swimming and rugby, her energy is infectious. It is hard to imagine that someone as lively as Sarah has been suffering from chronic pain her whole life.
Since she was little, Sarah has struggled with Irritable Bowel Syndrome (IBS), a common intestinal disorder that causes stomach pain and colon issues. However, it wasn’t until her junior year of college that she started experiencing symptoms that were no longer recognizable. “My local gastroenterologist kept giving me treatments that weren’t doing anything,” Sarah remembe...
Source: Thrive, Children's Hospital Boston - July 5, 2017 Category: Pediatrics Authors: Helen Santoro Tags: Our Patients’ Stories Alyssa Lebel dysautonomia headaches irritable bowel syndrome Source Type: news
Top tips for water safety and drowning prevention
As summer approaches, families head outdoors for fun ways to beat the heat. One of the most cherished summertime activities is swimming — whether in a pool, lake or beach.
But each summer, it’s important to remind ourselves of the sobering statistic that drowning ranks fifth among the leading causes of unintentional injury death in the U.S, according to the Centers for Disease Control and Prevention.
Here are a few tips to keeping your family safe in the water this summer.
1. Don’t assume your child is safe even if they know how to swim
Accidents happen. Assuming your child is safe can only lead to surprises w...
Source: Thrive, Children's Hospital Boston - July 1, 2017 Category: Pediatrics Authors: Connor Hall Tags: Health & Wellness Kids' Safety drowning water safety Source Type: news
