Ryan McIntyre as a newborn. The mark on his forehead, called a port wine stain, was the only outward sign that he might have Sturge-Weber syndrome. (Courtesy of Pam McIntyre)
About one in every 10 babies is born with a birthmark. Most are harmless and don’t require treatment. Some, however, can be signs of a serious problem.
When Ryan McIntyre was born, a dark red birthmark covered his left eyelid and part of his forehead. Within days, Boston Children’s dermatologist and Vascular Anomalies Center member Marilyn Liang, MD, diagnosed the discoloration as a capillary malformation, a common type of birthmark sometimes called a “port wine stain” because of its purplish color.
Liang also suggested that the mark could be a sign of Sturge-Weber syndrome (SWS), a rare condition in which extra but abnormal blood vessels grow on the brain’s surface. The unusual blood flow can lead to seizures, developmental delays, glaucoma and weakness or paralysis on one side of the body. While the total number of people born with SWS is not known, estimates range from one in 40,000 to one in 400,000.
An MRI would be needed to confirm the diagnosis, but because Ryan was otherwise healthy and didn’t have any symptoms, his doctors said they could wait until he was six months old before having the scan. Ryan and his family—including his twin sister, Ava—went back to their home in the Boston suburbs. Full story »
When Jen’s son Drew was diagnosed with aplastic anemia, a blood disorder, their entire lives changed. In this blog, Jen describes how she and Drew coped with the disease, treatment and recovery, as well as the care they both received at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. (Click the link to see the center’s new website.)
By Jen D’Auteuil
Jen and her son Drew
When my son Drew was diagnosed with aplastic anemia (AA) at 10 years old, our lives turned upside down. His bone marrow had stopped producing the cells that he needed for iron and oxygen transfers, for blood clotting and fighting off infection, making him very sick very quickly.
All of a sudden my active and social little guy was sidelined—he tired easily and was at constant risk of bleeding or getting sick, so he needed to be kept away from almost everyone he knew. He was started on a chemotherapy regimen called anti-thymocyte globulin (ATG), which doctors hoped would reactivate his bone marrow. In the meantime, Drew and our family went into isolation because he couldn’t be in public places, and we had to ban visitors from our home. Our only real contact with the outside world was by texting. (Something I had never bothered with; but a little time in isolation can change your mind!)
For the next few months we had to sit in this medical exile to see if the AGT did its job. It was a difficult time, but we were very fortunate to have a supportive and generous group of friends, family, church and community members to lean on.
As time went on, I found myself Googling “AA and children” hoping to find another family that could relate to our struggle. Through my search, I met another mom whose child had AA and through her, I met another and then another after that. Full story »
By Kipaya Kapiga
While Boston may be well-known for its great cuisine, the last thing a family traveling to Boston Children’s Hospital for long-term treatment is thinking about is fine dining. When parents care for a sick child in the hospital, it can be difficult for them to leave their child’s bedside to catch some sleep, let alone to take in the local fare. For more than a year, however, Boston Children’s has been working to change that by bringing the downtown Boston dining experience into the hospital.
Full story »
Laura on the track
It’s a common belief among female runners: The lighter you are, the faster you are. It’s also believed that menstrual irregularities, or loss of periods, are a healthy part of competitive training. Neither is true.
That’s precisely what Laura Duff, a senior at Colby College and an avid runner, wishes she knew when she was in high school.
It was during the summer before Laura’s senior year of high school that she became more aware of how she looked. “I don’t know what switched,” she says, “I just became very aware, and started to restrict my eating and be more controlling.”
“I wish I could tell my high school self that worrying about your body isn’t worth it”
While part of her diet was intentional, another part was simply due to the structure of high school. Long days of classes and cross-country practice with little scheduled time for snacks and lunch made it hard to focus on getting enough calories. Soon, her weight started to drop. Full story »
Being a mom means being a master of many skills. To succeed, you need to be a good listener, a quality teacher and, in some cases, you’ll need the speed of an Olympic athlete with the reflexes of a cat just to keep up with the kids.
And when the little ones get sick, the moms I know can transform into both nurse and doctor in an instant, tending to their children with compassion and care that rivals that of any medical professional.
No one understands this more than the patient families of Boston Children’s Hospital. In honor of Mother’s Day, I spent some time with a few of our patients and their mothers and asked the children what they’ll be celebrating this Sunday:
“I love my mom with all my heart. She makes me chicken noodle soup when I don’t feel good and takes me shopping when I do!” –Victoria, 6 Full story »
Shortly before Logan Collins was born, a prenatal ultrasound suggested a possible problem with her heart. Her mother, Erika, went into labor the next day, two weeks shy of her due date. Logan was born at just 5 pounds, 5 ounces and had a weak, high-pitched cry that sounded like a cat meowing.
“When I became aware of her birth weight and heard her cry, I had a good idea something was going on, but I didn’t say anything at the time,” Erika says. She suspected Logan had the same disorder as one of her cousins. Chromosomal testing in the Division of Genetics at Boston Children’s Hospital confirmed it: Logan’s fifth chromosome had both a deletion of one piece and a duplication of another. She was diagnosed with Cri du Chat—a rare genetic disorder whose name is French for “cry of the cat.” Full story »
By Kipaya Kapiga
Conor and Emi
The staff at Boston Children’s Hospital works very hard to ensure that every procedure, test and patient visit runs according to plan. But last week the hospital broke from tradition and embraced the element of surprise when some patients received an unexpected gift of toy bags signed by current and retired New England Patriots players, inlcuding Zoltan Mesko and Joe Andruzzi.
The bags, which will be the first of four quarterly donations, come courtesy of the Messages of Hope Foundation, a nonprofit that donates thousands of Happy Hope bags to children undergoing treatment in various children’s hospitals across the United States. The foundation was begun by Emi Burke, the mother of a Boston Children’s patient, who was inspired to help pediatric patients all over the country.
Burke’s son, Conor, is treated at Boston Children’s for developmental delays and epilepsy. During one hospital stay, she noticed a few patients who didn’t seem to have any distractions to help them pass the time. When Burke asked a nurse why this might be the case, she was told that many times when parents are arranging for a hospital stay, they simply forget to bring toys or items to entertain and occupy their child. For other families, a “box of crayons seems like a luxury item,” Burke says. Full story »
After she was stricken with a serious illness almost overnight, and then rushed to Boston Children’s Hospital where in a matter of hours she received multiple treatments—including an extremely rare liver transplant—Hannah Swift could be the most aptly named eleven-year-old in the world.
In an age where close monitoring, drugs and advanced therapies can prevent or delay transplant surgeries for weeks or months, Hannah’s story is an amazing example of medical collaboration where every minute counted in saving her life.
More than a stomach bug
Hannah had been coughing and vomiting for a few days when her mother Carolyn brought her to see a pediatrician. Given the season, both mom and doctor assumed Hannah had caught the flu, so she was sent home for a few days bed rest. After two days of sleep and chicken noodle soup, Hannah wasn’t feeling any better. A day later she was so weak that she needed help getting into the shower. After noticing a yellowish tint around Hannah’s eyes and skin, Carolyn called the doctor who said they needed to go to the local hospital right away. Full story »