Full-family support sees Hannah and her parents through AVM surgery

Nine-year-old Hannah from Vermont is passionate about skiing; not much keeps her off the slopes. In fact, not much slows her down or dampens her energy, period. So, when she experienced a ruptured arteriovenous malformation (AVM) last spring, she wasn’t sidelined long. Her parents, Katie and Rich, credit Hannah’s remarkable recovery to her vivacious spirit and the care they received at the Cerebrovascular Surgery and Interventions Center (CSIC) at Boston Children’s Hospital. They credit Boston Children’s for caring for them throughout the experience, too.

“It’s incredible the support they give parents,” Katie says. “They really took care of us while they were taking care of Hannah. That was huge because we needed it.”

To Boston by land and by air

Early one morning in March, Hannah woke Katie and Rich complaining of a piercing headache.

“It feels like something’s in my head trying to get out,” she told them.

By the time they arrived at their local Emergency Department in Vermont, Hannah was lethargic and unable to focus her eyes. The care team there acted swiftly, performing a CT scan that revealed bleeding in her brain due to a tangled mass of abnormal blood vessels. They reduced the pressure on her brain, stabilized her condition, and arranged for her transfer to Boston Children’s Hospital via Boston MedFlight.

Ready at Boston Children’s were members of the CSIC team, including Dr. Alfred See, Dr. Scellig Stone, and nurse practitioner Christopher Isibor. Right away, Dr. See recommended embolization, which involves administering blocking agents to an AVM’s ruptured vessels to stop blood flow. Embolization would reduce the risk of further bleeding and give Hannah’s brain time to reabsorb the hemorrhaged blood. A complete obliteration to surgically remove the AVM and restore proper blood flow in Hannah’s brain was planned for April.

Support, compassion, and expertise

That day in March was the start of a month of emotional ups, downs, and unknowns. Hannah’s AVM was located near her occipital lobe, so Rich and Katie worried what that would mean for her vision. Meanwhile, Hannah navigated a physical recovery while missing her friends, sports, and the comfort of home. What saw them through, though, was the compassion, expertise, and empathy of their Boston Children’s team.

“What made this bearable was knowing we were in the best place in the world,” says Rich.

“Everyone was incredibly skilled, incredibly talented, and incredibly humble,” Katie adds. “We found so much comfort in knowing they could see Hannah’s situation holistically.”

This meant the team spoke directly to Hannah about her own care in an age-appropriate and respectful way, child life specialist Mae Edwards helped her address her social-emotional needs, and Isibor coordinated all the moving parts of care. Katie and Rich are thankful for the patience and expertise of Dr. See and the team, who answered every question and addressed every concern about the AVM removal surgery, including the risk of impacting Hannah’s eyesight.

“Dr. See and the team do a lot of surgeries,” Rich says. “They see kids who are flying in from all over. So being at a place that specializes in pediatric neurosurgery and to have that kind of team was tremendous to us.”

Recovery, resilience, and a return to normal

At the end of April, Dr. See and the CSIC team removed the malformed blood vessels from Hannah’s brain, restoring proper blood flow and reducing the risk of future hemorrhages. The impact on her occipital lobe created a small blind spot in her vision, but within days, Hannah was easing her way back into school, telling her friends how she spent her April vacation.

Hannah will see the CSIC team annually for angiograms to assess the blood vessels in her brain. For the most part, however, she and her parents will manage her neuro-ophthalmology and other care at home in Vermont, where this summer she’s been living life to the fullest, complete with camp, time with friends, and lots of sports.

“We have every expectation she’ll be playing soccer and lacrosse this year, and ski racing in the winter again, which is her passion above anything else,” Rich says. “If you had told me in March that this is where we would wind up, I don’t know if I would have believed you. It seems like a miracle.”

Learn more about AVMs and the Cerebrovascular Surgery and Interventions Center.