Archive for midaortic syndrome
Not just another patient: Care for midaortic syndrome that’s ‘handcrafted’ for Iris
This past July, Iris Huot, her older sister, Audrey, and their parents, Jessica and Austin, gathered around their dining room table. To an outsider, it might seem like an ordinary dinner, but for the Huots, it was a moment of perspective — and gratitude. “It was the first time in eight weeks that we had ... Read More about Not just another patient: Care for midaortic syndrome that’s ‘handcrafted’ for Iris
For Echo, treatment for midaortic syndrome was ‘MAGIC’
Most 7-year-olds don’t have high blood pressure, let alone blood pressure that hovers around 180/110 mm Hg. (“Normal” blood pressure for kids that age ranges between 95/60 and 110/73 mm Hg.) At first Echo Roney’s parents thought her rising blood pressure might be linked to her diagnosis of a genetic condition called neurofibromatosis 1. But ... Read More about For Echo, treatment for midaortic syndrome was ‘MAGIC’
Maythum finally finds answers for midaortic syndrome
Maythum Mehdi was just 5 years old when he told his mother, Batul, that he was having trouble seeing: When he played on the computer, the screen appeared blurry. Right away, Batul — who was then training to be a cardiology nurse — sought medical attention. “I knew that wasn’t a good sign,” she says. ... Read More about Maythum finally finds answers for midaortic syndrome
Matt’s story: An innovative approach to midaortic syndrome
Until he was 12-and-a-half, Matt Sarracco had hardly missed a day of school. In fact, he had won awards for his near-perfect attendance. So it was concerning when, at a routine physical, his blood pressure soared to extremely high levels. “At first we thought the cuff must be broken,” says his mother, Kelly. But subsequent ... Read More about Matt’s story: An innovative approach to midaortic syndrome
Leaning into Sydney: A team approach to renovascular hypertension
In most ways, Sydney Murphy is a typical 3-year-old girl: She watches the movie The Princess and the Frog on repeat, names most of her dolls after the main character, Tiana, and loves the color pink. But she’s also wise beyond her years. “She knows how to use a blood pressure cuff and is really ... Read More about Leaning into Sydney: A team approach to renovascular hypertension
Staff Spotlight: Meet Jonette Jean-Louis
Jonette Jean-Louis is the program coordinator for the Midaortic Syndrome and Renovascular Hypertension Center at Boston Children’s Hospital. Midaortic syndrome is a rare but serious condition in which the part of the aorta (the heart’s largest blood vessel) that runs through the chest and abdomen becomes narrow. This can lead to lower blood flow in ... Read More about Staff Spotlight: Meet Jonette Jean-Louis
A note for my nurse
In honor of Nurses’ Week, we asked a few of our patients and their families to share what their favorite nurse means to them. Jack — Leah Frain, FNP “Leah is a kind and beautiful lady. She helps kids stop getting sick. I like giving her hugs. And kisses, too! My favorite memory of Leah ... Read More about A note for my nurse