Family raises money for Hydrocephalus research
On Sept. 16, a local 1-year-old little girl with Hydrocephalus and her family attended the Central Pennsylvania WALK to End Hydrocephalus in Hershey. Her family celebrating this little girl’s amazing strength and came together with other families and supporters at the walk in support of those with Hydrocephalus — a condition with no known cure.
Hydrocephalus is “an abnormal accumulation of cerebrospinal fluid (CSF) within cavities in the brain called ventricles,” according to the Hydrocephalus Association. The CSF cushions and protects the brain and spinal cord from injury. When there is an imbalance between the amount of CSF that is produced and the rate it is absorbed, Hydrocephalus occurs. As the fluid builds up, the ventricles grow larger and causes pressure inside the head, according to the association’s website.
Victoria Shirley Apker was diagnosed in utero at 32 weeks gestation with Hydrocephalus. “Hydrocephalus was like hearing a foreign language. We never heard the word, let alone know what it even meant,” Victoria’s mother, Megan Apker, of South Williamsport, said. “They discovered her enlarged brain ventricles after my belly was measuring larger than normal at this stage of pregnancy.” Apker also was diagnosed with preeclampsia the same day Hydrocephalus was suspected.
Victoria was born July 2, 2016 — a month early — at Geisinger Medical Center in Danville. She then received her first brain surgery at 5 days old — an Endoscopic Third Ventriculostomy (ETV), Apker said. “During this surgery (Victoria) suffered an intracranial brain hemorrhage, resulting in the endoscopic procedure to fail and need yet another brain surgery,” she added.
The brain hemorrhage also caused Victoria to have seizures and she was put on seizure medication for a month.
“She (Victoria) had a hard time feeding from being intubated, but the lactation team was wonderful getting her back on track,” Apker said.
At 26 days old, Victoria underwent her second surgery and received a ventriculoperitoneal shunt (VP) and then needed a blood transfusion due to anemia.
“A shunt provides an alternative fluid pathway through which CSF bypasses an obstruction(s) in the fluid compartments of the brain and acts when CSF absorption is otherwise impaired,” according to the association’s website.
Shunts have a 50 percent failure rate in children in the first two years and lead to numerous brain surgeries over the course of a patient’s lifetime, according to the site.
The severity of each individual Hydrocephalus case can vary. Victoria’s case was considered less severe, however, the outcome of her quality of life was unknown.
“Besides her scar, you would not know she’s endured so much in her short 15 months here with us,” Apker said. “Victoria is meeting and exceeding any expectations anyone thought she would.”
Apker said Victoria’s only setbacks so far have been delayed physical milestones. Children with Hydrocephalus typically have larger heads, but through the help of a few months of wearing a shaping helmet — Victoria’s “crown” — she now sits upright unassisted, crawls and pulls herself up to stand, Apker added.
September was Hydrocephalus Awareness Month, and the Apkers raised money for the Hydrocephalus Association by creating a team to participate in the WALK to End Hydrocephalus and selling bright blue T-shirts with a pink flamingo on it that read “Victoria’s Flock.”
“When we created our walking group on the Hydrocephalus Association website, we set our fundraising goal at $150. Through T-shirt sales and monetary donations we raised $800, which was more than we could have imagined — just starting out,” Apker said. “We hope to think of new ways to fundraise to exceed next year’s goal.”
The Apkers, along with other family members and friends, walked together — wearing their “flock” T-shirts — at the Hydrocephalus Association’s WALK last month.
Victoria enjoys playing with her baby dolls, her cat Mr. Pita and her brother Connor and sister Kaitlyn. She also loves to attend Connor and Kaitlyn’s sporting events, where she can get her favorite food — concession stand french fries. She lives at home with her brother, sister, mother and father, David.
Apker set up an account for “Victoria’s Flock” at M&T Bank, where donations can be made into their fundraising account to go toward next year’s walk. Donations also can be made directly on the Hydrocephalus Association website, hydroassoc.org, and search for Victoria’s Flock.