Woman creates network for Minn., ND families dealing with hydrocephalus
ALEXANDRIA, Minn. — When Jan Scearcy learned her granddaughter Noelle had been diagnosed with hydrocephalus, a condition causing a fluid build up on the brain, she was instantly twice as worried as most people would be.
"It was doubly hard because you're dealing with your son and daughter-in-law plus your grandchild," the Alexandria woman said. "You wonder how can you help the most and stand behind everybody."
Noelle, who will be 5 in October, lives with her family in Dilworth. She was diagnosed with hydrocephalus in October 2013, right after she turned 1.
"Life until then was completely normal," said her mother, Briana Scearcy. "She had a big head, that was really the only thing that gave us an indication of anything."
Because of the size of her head, the doctor at Noelle's 1-year checkup suggested having an ultrasound done. The ultrasound revealed fluid in her brain. She was then admitted to Sanford Children's Hospital in Fargo, where she underwent an MRI the same day. The MRI revealed the fluid, but also a tumor on Noelle's brainstem.
The Scearcys were then transferred to Gillette Children's Specialty Healthcare in St. Paul, where they met with a neurosurgeon. The next day, Nov. 1, 2013, Noelle underwent brain surgery to place a shunt, a device which drains the fluid from the brain.
"Think of a sump pump, that's essentially what is in her brain," her mother said. "She's got a tube that goes behind her ear down her neck and drains into her abdominal cavity. It's supposed to stretch and grow as she does, and there's enough cord for her to be at least 5'8"."
Doctors made the decision to leave the tumor alone and monitor it.
"It's in a position where if we touch it, it could create a lot of other issues, even death," Briana Scearcy said. "We just continue to monitor it and luckily it hasn't done anything. It's stayed exactly the same."
In the nearly four years since her surgery, Noelle's shunt has continued to function correctly and she now only has annual checkups for the condition. Today, she is able to do everything other kids her age can do.
Though the checkups are annual, the condition is something the Scearcys live with each day.
Because of her family's own experience with hydrocephalus and lack of connection to other families in the area dealing with the condition, Briana Scearcy created the Hydrocephalus Association Network Community, a group on Facebook made up mainly of families from North Dakota and Minnesota.
"It's been really cool to share information, ask for recommendations, share doctor contacts," she said. "I just wanted to have a presence. That was something that was really fearful for me (at the beginning). I didn't have anyone locally I could reach out to with questions or concerns or just to know that people live normally with this."
She also serves as the North Dakota spokesperson on the condition.
"I do some online trainings annually to stay up to speed," she said. "The pediatric population is one thing, but there's also a lot of elderly adults who also get it. I like to stay educated on both in case someone were to reach out."
Briana Scearcy encourages families dealing with a hydrocephalus diagnosis to reach out so they don't have to go through the situation on their own.
"It's an unpredictable road with this condition which is part of the stress, but also part of the satisfaction because every story can be so different," she said. "Don't be afraid to reach out and talk about it with other people. For me and for Noelle, that's been something, to know you're not alone, you're not going through this without a support system."
To learn more about Hydrocephalus, visit www.hydroassoc.org online.