Sarah faced big challenges from the start.
Born at 22 weeks weighing just one pound, Sarah had hydrocephalus. Fluid was building up in her brain, which can create pressure and damage. She also had cerebral palsy, which affects how the brain controls muscles and can limit a child’s ability to move and speak.
But Sarah’s mom, Jennifer, noticed her newborn daughter balling up her tiny hand into a fist and holding it up, like she was ready to fight.
As Sarah grew, she had several brain surgeries in her native New York to drain the fluid in her brain. Doctors installed a complex system of four shunts, or tubes, but the surgeries led to many complications, like infections and repeated hospitalizations.
Jennifer knew there had to be another way. She brought Sarah to Boston Children’s Hospital, a world leader in treating hydrocephalus, for a second opinion.
“Boston Children’s saved my daughter’s life,” Jennifer says.
A Boston Children’s team worked together to rethink Sarah’s treatment. They removed her complex shunt system and installed a much simpler, more effective solution: a single shunt that can be adjusted more easily and prevent more surgeries. Boston Children’s doctors first developed the innovation in Africa, where hydrocephalus cases are more common.
During her stays at Boston Children’s, Sarah received far more than surgical care. Her care team provided physical, occupational, and speech therapy, helping Sarah build strength and independence. Vision specialists worked with her to improve how her eyes and brain work together. Music therapy brought moments of joy—and even helped Sarah, who is mostly nonverbal, say a new phrase for the first time: “Thank you.”
“Boston Children’s means the world—all the care, the love, the comfort they gave us,” Jennifer says.
Now 6, Sarah is a bubbly, happy girl who loves dancing, coloring, makeup, Barbies, and the color pink. She’s always smiling and is attentive to those around her, showing with her enthusiasm and mannerisms that she understands what others say even if she can’t speak.
Sarah regularly visits Boston Children’s to get care tailored to her complex needs. Many of her symptoms, like seizures, have lessened or gone away, and she needs far fewer medications than she once did. Physical therapy experts have helped Sarah make great progress on her movement, balance and coordination.
Sarah is already giving back as a patient partner for first-time marathoner, Victoria, who raised funds for the hospital through Miles for Miracles.
With support from Boston Children’s, Sarah’s future is bright—and her joyful spirit continues to light the way.
