This October brings us to our third annual Cleveland Walk to End Hydrocephalus in honor of our little warrior, Clara, and it is the first one Clara will be able to actually walk in!

For those of you not familiar with Hydrocephalus: it is a build-up of fluid in the cavities of the brain. The extra fluid puts pressure on the brain which can cause brain damage. Hydrocephalus can occur at any age but approximately 1 out of every 1000 babies will develop hydrocephalus in-utero. Clara has congenital hydrocephalus caused by a blockage between her 3rd and 4th ventricles. She has a VA (ventriculoarterial) shunt that was placed at birth which reroutes her excess cerebral spinal fluid (CSF) from her blocked ventricles down into her heart.

Hydrocephalus in children can often lead to developmental delays and with an additional diagnosis of mild cerebral palsy working against her, Clara finally began walking on her own at 21 months (average age to begin walking is around 12months old). Though she’s had a year of walking under her belt, she still has similar habits as a new walker and we do weekly physical therapy to help strengthen and sharpen her skills. She falls and trips a lot easier than most children, but it hasn't kept her down yet!

We call Clara our “narrator” as she doesn’t miss a single detail in our everyday life and must always confirm it as she sees it and repeat it as she hears it. She loves fancy things and putting on dress-up clothes is usually one of her first morning tasks. She sings and dances at any opportunity and can charm just about anyone with her smile and twinkling brown eyes behind those pink bifocal glasses. She loves barbies and little dolls and is often off in her own little corner reading books (or getting into quiet mischief).  

This past December, we experienced Clara’s second shunt malfunction. This was the first failure that had the classic symptoms we had read so much about. For a few days, she would rub her face and/or head and often lay down in the middle of her day-to-day activities. She grew increasingly sleepier each day. We ruled out different sicknesses with her pediatrician to make sure we weren’t missing something more obvious before heading to the ER. When she started vomiting, we knew that it was likely the shunt.

After some time in the ER getting X-Rays, a CT Scan, and a shunt tap they confirmed the tubing into her heart had become too short and she needed surgery to lengthen it. VA shunts come with yearly (give or take) surgeries to revise the length until the person stops growing, and  growth spurts in children make it even more challenging to plan for this. We now get X-rays every 3 months to help monitor the length of the tubing and are hopeful we have at least another 3-6 months before her next [this time planned] surgery.  

The older Clara gets, she continues to become more aware of what comes along with Hydrocephalus. She now recognizes the hospital parking garage and starts begging not to go in. She twirls around in her hospital gown insisting she’s a princess until she’s lifted upon the MRI machine in tears. She’s screams “All done!” as she’s held down for her X-Rays and is leery of any Nurse or Doctor who walks into the room. The heartbreaking reality is that shunts remain among the most failure-prone life-sustaining medical devices implanted in modern medical practice to this day. Before the age of 2, Clara has had 4 surgeries related to her hydrocephalus. Before she’s full grown, she could have another 15± surgeries and that doesn’t include unplanned shunt failures that could pop up.

One thing we’ve learned about Clara is she doesn’t let anything get in her way. She is tough as they come but still will melt into your arms for a good snuggle. She is feisty, she is fearless and she is as “normal” as can be in her own oh-so-special way. She’s come a long way from day one but Hydrocephalus will continue to be part of her life every day for as long as she lives.

On October 5th we are joining the Cleveland Walk to End Hydrocephalus. We ask for continued support and prayers for our Clara and for the million Americans facing Hydrocephalous every day.  If you’d like to join us in walking or donating to Hydrocephalus research, please click on the link below. 

We thank you and appreciate you following along on Clara’s journey!

Have a donation you'd like to mail in? Please include participant to credit, WALK Site name (city) and mail to: Hydrocephalus Association- Data Entry Div, 9249 S. Broadway, #200-845, Highlands Ranch, CO 80129