Stories about: pulmonary hypertension

“This will be the hard part.”

grieving parent

The words were spoken with a hush, gently and quietly as the dim lights softly flickered in a darkened hospital room as I held my six-and-a-half-month-old child, his last breath taken hours before.

After spending nearly seven months in a pediatric cardiothoracic ICU with my infant son, the hard part should have been behind me. And yet, it wasn’t. I knew it, but I didn’t want to know it.

Life stood still in that moment. I didn’t know how I would pick myself up and keep going. I was young, but my future just looked crumbly. All the perfect pictures I created of how my life would look months and years before.

Mine was supposed to look like two boys, 15 months apart, growing up together, playing cars on the living room floor, me breaking up fights with time outs, them running out to the backyard and getting dirt under their fingernails as they dug for worms. As far as I knew, life would unfold without a hitch.

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For the love of Sharieff: A father dedicates his life to his son’s complex medical care

Photos by Katherine C. Cohen 

SharieffDadBench

On an unseasonably warm day in February, the sun shines brightly at Clasky Common Park, a New Bedford town gem with views of the river. Twenty-one-year old Sharieff Hester sports a pair of cherry-red shades and a big smile. He walks confidently around the park, his father and sole caretaker David Hester dutifully following behind, checking in often. “Are you cold son?” he asks. Sharieff answers through his tracheostomy, “I’m fine, Dad.”

David stops to adjust his son’s scarf and offer him a sip of water. “We have a routine every morning. The first thing I do is hug Sharieff and tell him how much I love him. Then I make sure his trach is clean and dry, and we say a prayer together.”
SharieffTrach

Sharieff has been cared for at Boston Children’s Hospital since his birth in 1994. His main diagnoses are Arthrogryposis, a rare congenital condition characterized by stiff joints and abnormally developed muscles; Klippel-Feil syndrome, a rare birth defect that causes some of the neck vertebrae to fuse together; restrictive lung disease; and pulmonary hypertension.

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Mapping a way to medication adherence

Eighteen-year-old Maggie Mansfield, a communications major at Boston College, is a two-time double-lung transplant recipient — once, at age 4, due to a condition called pulmonary hypertension in which blood pressure in the arteries of the lungs is abnormally high, and again at age 7, when her body rejected the first transplant. Since then, Maggie has remained relatively healthy due in part to her strict medication regimen.

Maggie Mansfield
Maggie Mansfield

“Timing is the most challenging part of taking my medications,” Maggie says. “As I get older, I get busier. It’s not always easy to stop what I am doing and take my pills, but I try to keep my timing the same so I don’t throw off my labs.”

Medication adherence is critical to the long-term health of an organ recipient. But taking upwards of 20 medications per day is often overwhelming, particularly for adolescents and young adults as they become more independent.

“I equate it to learning how to drive a car,” says Kristine McKenna, PhD, a psychologist in the Boston Children’s Hospital Pediatric Transplant Center. “We don’t just toss over the keys. There are a lot of steps to learning — getting a learner’s permit, practicing driving with a parent. And, again, we don’t just send them out to drive across the country when they get their license.”

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Rolensky’s story: saving his heart by fixing his brain

Rolensky

In the fall of last year, a young woman named Gerdline walked into Hospital Saint-Nicholas in Saint-Marc, Haiti, carrying her baby son Rolensky. Only four months old, the boy was in a bad way: thin, breathing rapidly and lethargic, with a bluish tinge to his skin.

Little did Gerdline know as she crossed the hospital threshold that Rolensky’s heart was failing—because of a one-in-a-million blood vessel malformation in his brain. Nor did she know that the two of them would soon be on a plane to Boston, where doctors from across Boston Children’s Hospital would come together around her boy to save his heart by fixing his brain.

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