Hilda-Ann

 My name is Hilda-Ann, and my life story is very unique and rare.

My journey with hydrocephalus started in infancy. I was severely abused and neglected as an infant, and I am a survivor of shaken baby syndrome. As a result of this trauma, I was diagnosed with hydrocephalus and had my first shunt placed at four months old. I have had 23 surgeries in my life, 22 of which were between the ages of four months old and three years old. I also live with agenesis of the corpus callosum, a congenital brain condition

Early on, I experienced developmental delays and was given a failure-to-thrive diagnosis by doctors. To beat the odds stacked against me, I was enrolled in the local regional center’s physical therapy program that would help me build strength. However, there were still doubts that I would never be able to walk, talk, or meet other developmental milestones.

At 4 months old, I was unofficially adopted by my foster family. My mom, dad, and big sister always had friendly arguments over who raised their hand highest that day; they knew I was meant to be a part of the family. I spent 14 years in their loving home, along with my biological brother and my foster baby brother!

I had my most recent shunt surgery at 13 years old. This came with a lot of emotions to process and carry. It was terrifying because I did not know what to expect and had so many questions. What would recovery look like? Would I be the same as before surgery? How much school would I miss? What will my friends say? I was embarrassed about my hair being shaved, worried that the surgery would result in more scars on my abdomen, worried about surviving surgery, and the recovery process. I feared that my shunt would fail again.

Thankfully, none of my worries became a reality. My friends were understanding and supportive and bought me bandanas to cover my head. My teachers let me go home early when I had headaches and consistently checked in with me. My family was there for me, helping me in my recovery.

Not only did I survive, but I thrived! I was able to do gymnastics, cheerleading, volunteer at a hospital, and be a leader at school. My shunt is still going strong 25 years later.

My twin and I were legally adopted when I was 14 years old. Some factors lowered my odds of being adopted at the time: having hydrocephalus and a shunt, which meant I was given a special label by Los Angeles County child and youth services, and my age. However, my big sister did all she could to support my twin and me, and she legally adopted us.

The statistics for success and thriving were also not in my favor. Less than one percent of teens in foster care are adopted, and even fewer special needs teens are adopted. The average stay in foster care is two years with multiple foster placements. I was in foster care for 14 years in one loving home. Our adoption, with our big sister fighting, took five years!  Less than 50% of foster youth graduate high school, yet I graduated with honors and earned several scholarships to attend a university! Less than 3% of foster youth earn a bachelor’s degree – I have two master’s degrees! 50% of foster youth are unemployed – I am working in my dream career! I went from struggling with hydrocephalus and the effects of shaken baby syndrome in my early years to now becoming a practicing Licensed Clinical Social Worker (LCSW) in the state of California. I hope to expand my credentials to other states someday.

Ultimately, my goal is to become a clinical supervisor, helping those who come after me to obtain their license as an LCSW. Today, I work with adults, children, youth, and families living with hydrocephalus and other chronic conditions, along with other populations that I work with in my practice. I am strengths-based and work with my clients to help them thrive! I am blessed!

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Tell us about your journey with hydrocephalus!

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