Rochester Hills mom walks for awareness about hydrocephalus

Rochester resident Amy Gerlich loves being a mom to her three boys, and one of them has a condition that turned her into an advocate.

Gerlich spends her days working and raising awareness about the condition, hyodrocephalus. When she was 22 weeks pregnant with her youngest son, Axel, he was diagnosed as having spine abnormalities. The news was difficult to hear, but Gerlich says it helped her prepare.

Gerlich​ had previously witnessed the awful effects of the condition from experiences with her niece, who also had hydrocephalus of a different kind from her son. Her niece had more than 100 brain surgeries and died when she was 3 1/2 years old, in 1999.

Axel was scheduled for delivery by C-section on Nov. 27, 2017, at Royal Oak Beaumont, but instead, but Gerlich went into natural labor on Nov. 26 and ended up delivering him via C-section within 30 minutes. Axel spent 31 days in the newborn intensive care unit.

Hyrocephalus is a chronic condition causing abnormal accumulation of cerebrospinal fluid, resulting in pressure on the brain. The effects of hyrocephalus come in a wide spectrum, and diagnoses are not the same. The condition affects approximately 1 million Americans and anyone, at any age, may be diagnosed with hydrocephalus.

There is no way to prevent hydrocephalus, and no known cure. The only treatment requires brain surgery, most often to implant a shunt to divert the excess fluid from the brain to another part of the body. While many people are helped by surgery, others need further operations to stay well.

Axel sees doctors at Royal Oak Beaumont and the University of Michigan for various treatments. At 3 days old Axel got his colostomy bag. When he was 9 days old he received a feeding tube and at 22 days old he had brain surgery for his shunt.

Now nearly 8 months old, Axel deals with communication issues and has profound hearing loss, for which he is going through a process to get cochlear implants.

Gerlich has confidence in Axel’s doctors. And the family — husband Greg, and boys Calvin, 10, and Jacob, 13 — is always pitching in to work with him on his basic motor skills, changing his colostomy bag and other daily tasks.

Despite all of his challenges, Gerlich says Axel is a happy baby, and all smiles.

“So few people know about hydrocephalus,” she says, “and when most people see Axel they don’t see anything wrong with him. It’s a invisible condition. We adore him and how hard he is working at being Mr. Baby Man. I feel like everyone is so proud of their kids — as they should be — but we are so beyond proud of him. And have the best reason: He is a warrior! He’s not ‘just a baby’! We will always take our time to help others understand (his condition).”

Anytime Gerlich leaves the house now, aside from work, she is wearing awareness ribbons and shirts. She also blogs about life with Axel on her blog, Amy’s Scrap Spot and wants to combine her love of embroidery to make creations as another avenue to avenues to raise awareness about hydrocephalus.

The Hydrocephalus Association is putting on its annual WALK to End Hydrocephalus to raise awareness this month. Founded in San Francisco in 1983 by parents of children with hydrocephalus, the association today is the largest private funder of hydrocephalus research. It a national nonprofit organization dedicated to eliminating the challenges of hydrocephalus by funding research, and by supporting patients and families affected by the condition.

• The 2018 Detroit WALK to End Hydrocephalus will be on Sunday, Aug. 26, at Rose Senior Living-Providence Park Hospital. Registration starts at 7:30 a.m. and the event runs until 2 p.m. For info about joining Axel’s team and supporting the family for the walk visit bit.ly/AxelOliGests. To learn more about Axel’s story visit Amy’s blog at amyscrapspot.blogspot.com.

• Online: Hydrocephalus Association, hydroassoc.org; Dandy-Walker Alliance, dandy-walker.org; National Organization for Rare Disorders, bit.ly/RareDandyWalker.