For the Nielsen family, Sunday wasn’t a day to think about 3-year-old Brooke’s upcoming brain surgery. It wasn’t a day to worry about the logistics of traveling to New York City for the procedure later in the week or about the fact that only one parent would be permitted to accompany Brooke to the hospital.
Sunday was simply a day to smile and celebrate a vibrant little girl who loves playing dress up, riding her bicycle and keeping up with her four older siblings.
“Delran is a really tight-knit community,” Brooke’s father, Jim Nielsen, said. “When they find out any child needs to have surgery, they come to show their support.”
Brooke was no exception.
With fire sirens blaring, motorcycle engines revving and princesses singing, a parade in Brooke’s honor made its way through the Summerhill development in Delran. As Brooke waved, laughed and – at times – stared in awe at the tremendous spectacle, one would never guess she would be going for brain surgery a few days later.
Following a seizure at 13 months old, an MRI/CT scan of Brooke’s head and brain revealed both craniosynostosis and Chiari malformation. A month later, she underwent surgery to correct the craniosynostosis, which is when the skull bones fuse too early, prohibiting the brain and skull from proper growth.
“They basically took her skull apart and put it back together like puzzle pieces with plates and screws. This way her skull could grow and expand the way it’s supposed to,” Brooke’s mom, Amy Nielsen, explained via email to The Sun.
Next was addressing the Chiari malformation – when the bottom part of the brain presses down into the spinal canal and, in Brooke’s case, blocks the flow of spinal fluid. Brooke’s first surgery was not successful, which led Amy to research and find a New York City-based neurosurgeon specializing in the condition. This surgeon is scheduled to perform Brooke’s procedure on July 29 at Morgan-Stanley Children’s Hospital in Manhattan.
“Her brain is so far down that it is blocking the flow of her spinal fluid. Now there is a huge buildup of cerebral spinal fluid in her spine. If this continues to build up, it can press on her spinal nerves and cause irreversible damage,” Amy said.
Brooke’s next surgery will, like the first, remove a bone from the back of her head, but this time the doctor will “shrink” the bottom of her brain with electrocautery, a process that uses electricity to heat and eliminate body tissue.
“I feel very confident in this doctor,” Amy said. “The sad part is that because of COVID precautions, the hospital is only allowing one parent to be in the hospital at a time, so I have to go by myself. Sit in the waiting room by myself while my baby girl is in surgery. The scariest time of both of our lives. I’m so sad it has to be this way, but it is the only option.
“We cannot wait any longer for this surgery. We are praying it will be a success.”
After Sunday, Amy will have something uplifting to concentrate on while her daughter is in surgery. She is planning on watching the parade videos and looking through the photos during the three-to-four-hour procedure.
“There’s no words, really,” Amy said of the parade. “I was shocked with the amount of people who showed up.”
The parade came to fruition after Amy posted about Brooke’s upcoming surgery in a local Delran residents Facebook group, specifically mentioning her daughter’s love of motorcycles. She was inspired after seeing so many car parades for birthdays and celebrations over the past few months.
“I thought, ‘Why don’t we do something fun for Brooke and raise awareness at the same time,’” Amy said.
The response was tremendous. On the day of the parade, the Nielsens decked out their front yard in purple – the ribbon color for Chiari malformation. Waiting in the yard was Brooke (in a purple dress), and she was joined by her parents; siblings Kyle Borella, 22, Julia Nielsen, 14, James Nielsen, 12, and Andrew Nielsen, 7; grandparents Wendy and Dave Bryan and Darlene Nielsen and cousin Logan Nielsen, 10.
The Delran Fire Department led the way, followed by emergency vehicles and classic cars, members of the Widow’s Sons Masonic Riders Association and other motorcyclists, princesses from Minnie’s Magical Moments and car after car of well-wishers waving signs of encouragement.
The Nielsens didn’t know most of the participants, and they didn’t know many of the more than 100 who couldn’t attend the parade but sent messages of encouragement via Facebook.
“It was very emotional. I saw people crying in their cars. That hit me really hard. These people are feeling very emotional about a stranger they don’t even know,” Amy said.
But while there were a lot of tears at the parade, none were coming from little Brooke, who was also celebrating her Aug. 9 birthday a little early with all of the excitement. The soon-to-be 4-year-old was all smiles while waving to the parade and accepting gifts of toys, flowers and cupcakes from those passing by. She was thrilled when Elsa serenaded her with “Let It Go,” and she had a chance to visit with the princesses.
Of course, Brooke didn’t hesitate when asked her favorite part of the parade.
“The motorcycles,” she exclaimed.
The Nielsens have lived in Delran for 15 years and, prior to the parade, Amy said they “couldn’t be happier.” After seeing their community come together for their little girl, that sentiment is even stronger.
“We are just overwhelmed with joy,” Amy said. “We’re so thankful for everything.”