baby with hydrocephalus

Overcoming Hydrocephalus: The Miracle Story of Parker Grelecki

Parker Grelecki was born with hydrocephalus, a condition that causes a buildup of fluids in the brain. He was only two days old when doctors placed a shunt in his brain, the first of many procedures to drain the excess fluid and reshape his skull. His parents had no idea how much the condition might impair his development. But today he is 14 and has exceeded all of his doctors’ expectations. Despite all odds, he excels at school and has a gregarious and engaging personality. 

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Born With Hydrocephalus

Parker’s parents — Crysie and Ryan — got the diagnosis when Crysie was 20 weeks into her pregnancy. The ultrasound showed the baby’s head was larger than usual. Further tests found a blockage between the third and fourth ventricles in the baby’s brain, stopping spinal fluid from draining properly. The doctors warned that the build-up of fluid could severely inhibit Parker’s neurological development. For comparison, an average newborn child’s cranial cavity has 90–95% brain matter and 5–10% spinal fluid. But Parker had less than 2% brain matter and over 98% spinal fluid. [1] 

When he was two days old, doctors placed a shunt in his brain to drain the fluid. “I was by his side the whole time — talking to him, praying over him, holding his hand, rubbing his head. That unconditional love just rushes over you, and here is this helpless baby that’s been entrusted to me and I can’t do anything for him,” Ryan said. [2]

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For the next nine months, Parker underwent more procedures to ensure proper draining and reshape his skull to allow room for the brain to grow and develop properly. At four weeks old, he started therapy, and has continued with physical therapy and occupational therapy. His hydrocephalus recovery surpassed everyone’s expectations. He even skipped the crawling stage and started walking as a baby. 

Read: Boy Born Without A Brain Overcomes Incredible Odds To Live

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We are just along for the ride with Parker’s life.

Despite all of his challenges, Parker has grown up to be a smart, warm, and friendly fourteen-year-old, who loves sports and dreams of becoming a sports announcer when he grows up. He adores his siblings, Chase and Emily, who not only support him but advocate for anyone brushed aside for being different. Last year, his family got a Toto James, an adorable mini goldendoodle, to be a service dog for Parker. They posted a series about training Toto on their YouTube channel. 

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For his thirteenth birthday, Crysie reflected on the miracle of Parker’s life. “…Today, as we celebrate Parker, my prayer is that you look at his life and know how much God loves you.  I also hope that you know that He has a plan, a purpose and a way for you.  Even if the circumstances or situation you are experiencing are extremely painful, difficult and seems there is no way.

“Thank you so much for everyone that has supported, prayed and loved on Parker.  You have made such a difference in his life and we are so thankful for each and every one of you.  Also, stay tuned because as we always say, we are just along for the ride with Parker’s life.” [3]

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More about Hydrocephalus

Hydrocephalus is a medical condition where fluid builds up in the brain and causes the head to swell. Typically, cerebrospinal fluid moves through the brain’s cavities called ventricles. But hydrocephalus causes the ventricles to expand and press against other parts of the brain. This can result in brain damage, as well as impair physical and intellectual development. Therefore, treatment should begin as quickly as possible to limit the damage.

This condition mostly occurs in children and adults older than 60, but it can appear at any age. According to the National Institute of Neurological Disorders and Stroke, about one or two in every thousand babies are born with hydrocephalus. Symptoms in infants include bulging in the soft front part of the head, head swelling rapidly, seizures, extreme fussiness, low muscle tone, vomiting, eyes fixed downward, and excessive sleepiness. 

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In Parker’s case, hydrocephalus began before his birth. These cases can occur from a genetic anomaly, certain infections, premature birth complications, or a birth irregularity where the spinal column doesn’t close properly. When it appears in children and young adults, it’s often a result of a central nervous system infection like meningitis, bleeding in the brain, injuries, head trauma, or tumors in the central nervous system. In adults, there’s not always a known cause, but people are at higher risk if they’ve had head injuries, bleeding in the brain, brain-related infections like meningitis, brain surgery, strokes, and degenerative disease like Alzheimer’s. [4]

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Parker Grelecki, December 2021. Image Credit: Crysie Grelecki | Facebook

Diagnosis and Treatment

Hydrocephalus can become fatal without medical intervention. While treatment can’t reverse all of the brain damage, it could prevent further damage and restore the flow of the spinal fluid. Most cases are treated with surgery to insert a shunt implant to drain the fluid. Alternatively, a surgeon can perform a ventriculostomy instead where they cut a hole in the ventricle to allow the fluid to leave the brain. After that, many patients may need help to manage the resulting disabilities. For children, this can involve seeing developmental therapists, occupational therapists, mental health professionals, and pediatric neurologists.

While it’s impossible to prevent this condition, one can reduce the chances of it occurring. First, ensure to get proper prenatal care to reduce the chance of going into premature labor, which can cause hydrocephalus. Get vaccinated against infections and illnesses that can lead to hydrocephalus and get regular screenings to receive prompt treatment in case one occurs. Use safety equipment like helmets and seat belts to lower the risk of head injuries, and ensure the children’s gear like strollers and car seats meet proper safety standards. [5]

Keep Reading: ‘He is our inspiration’: First day of school for Glasgow boy with rare health difficulties

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Sources

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  1. “Parker Grelecki’s Story.AUDM. Emily Butcher. June 12, 2020
  2. “Grab a tissue before you read about Little Parker’s miracle story.Newsner. August 31, 2022
  3. Parker turns 13 TODAY!!!Facebook. Crysie Grelecki. September 9, 2021
  4. Hydrocephalus.” AANS. Lawrence M. Shuer, MD, FAANS, Rut Thakkar
  5. Everything You Need to Know about Hydrocephalus (Water on the Brain).Healthline. February 22, 2022
Sarah Biren
Freelance Writer
Sarah is a baker, cook, author, and blogger living in Toronto. She believes that food is the best method of healing and a classic way of bringing people together. In her spare time, Sarah does yoga, reads cookbooks, writes stories, and finds ways to make any type of food in her blender.
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