Allison

My daughter’s name is Allison. As a baby, we started to notice delays in milestones, and she would scream daily. After numerous appointments, she was diagnosed with hydrocephalus at 11 months old.   

A few days after her diagnosis, she had her first surgery to place a shunt in her brain to help drain the excess fluid. After surgery, she continued to make little progress and was not able to meet milestones as a baby.  

It was later determined that she had been experiencing intermittent blockages of her shunt and that the valve was not working properly. She required her second brain surgery at age one. Her first shunt only worked for nine months. 

At the age of two, she could not walk independently and required intensive therapy to learn to walk. Her therapist worked very hard with her to help her improve. 

Around the time Allison turned three, we noticed another decline in her progress and overall health. She would scream daily and tell us that her head hurt. 

The MRI results showed that her shunt was overdraining, and that one of her ventricles was so small it had almost collapsed. She had her third brain surgery to revise her shunt at this time. 

As parents, we became very discouraged that frequent shunt malfunctions seemed to be such a common problem. Allison had three brain surgeries by the age of three. 

Shortly after her third brain surgery, she was also diagnosed with atonic seizures. This became a new worry associated with her hydrocephalus diagnosis. 

Allison is currently six years old and thriving. We feel so fortunate that she’s had three years of being brain-surgery-free. She still struggles daily with headaches, and it is a constant worry that it could be a sign of her shunt no longer working. 

I went to Washington, D.C., this year with the Hydrocephalus Association (HA) to advocate for better funding and research for those living with the condition. I strongly believe that hydrocephalus needs to be better researched and understood by medical professionals. It took months to get Allison help, and even today, at times it is difficult. Allison is so strong, and her biggest supporter is her twin sister named Maci. 

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