I was born 10 weeks early, and as a result spent the first seven weeks of my life in an incubator. Six days after I was born, my pediatrician told my family that there was a possibility that I had cerebral palsy (CP) but that an official diagnosis couldn’t be made until I was 9 months old. During this conversation, my parents were also informed that I had suffered a brain hemorrhage. At 5 months old I had my first surgery: a shunt was inserted to drain fluid buildup in my brain (causing my head to swell) resulting from hydrocephalus.
Once I got the official diagnosis of spastic diplegia cerebral palsy at 9 months old, I was referred to Gillette. We first met with a pediatric rehabilitation medicine specialist who quickly determined that what I really needed was an orthopedic surgeon. So I began seeing Tom Novacheck, M.D., who is my doctor to this day.
From a young age, I knew the details about what was happening in regards to my CP and what needed to happen. But I didn’t ask any questions until I was in preschool. My mom remembers me asking, “Why do the other kids just get to walk and I have to use a walker?”
Gillette Becomes My Home Away From Home
As a patient at Gillette, I’ve found that the staff have done everything they can to make my experience a good one. It never mattered if it was just a regular check-up, preparation for surgeries and treatment, the hospital stay or the process of recovery. The staff members at Gillette, no matter what their job is, are always kind and friendly. I learned to never be afraid to ask questions: they want to help!
My family has also helped make the process of having surgeries easier over the years. I’m a very easygoing person and it always makes things easier for me when I can stay calm and relaxed. I made sure prior to surgery day that my family knew that it would be most helpful to me if they also stayed relaxed and didn’t start saying or doing things that would make me nervous. Once at the hospital, my dad would come into the operating room with me. Doing this allowed me to bring my blanket with me, a blanket my grandma made for me that I still have on my bed.
After I was out of surgery and settled in the hospital room, my family would bring certain things from home. The things I asked for varied depending on my age, but I always asked for favorite things to be brought to the hospital. As a teenager, the only things I asked for after I was out of surgery were my cell phone and laptop. I wanted to stay connected to my friends and continue working on school work.
Surgeries Mean Changes for Entire Family
I was 3 when I had my first surgery at Gillette— I would go on to have eight additional surgeries. At that time, my siblings were 8 and 6 years old. It was the first time my family had spent a lot of time away from one another. It took some time to adjust to not being around one another all the time.
The other major challenges came during my recovery process. I’m a very independent person so it took some adjusting to allow my parents and siblings to help me do things I would normally do alone. The simplest tasks like going to the bathroom, showering or bathing, and getting dressed became the most challenging and stressful parts of the day. Over time, I became better at asking for help and my family began to understand the things they could do to make the transition easiest for me.
Today my siblings and I are all grown up and out on our own. I’ll be graduating from the University of Wisconsin-Whitewater in May 2016. After some time gaining more work and research experience, I plan to go to graduate school to become a child life specialist.
My Tips for Parents and Kids
- Don’t shield your child from the conversations about his or her disability and the possible surgeries and treatments he or she may need to have.
- Even if they don’t understand everything, children should be able to have a say, even if it’s about something small.
- Just like you, your child should be able to ask questions.
- Respect your child’s wishes when possible. I always requested not to have surgery during summer months or too close to the start of summer. My parents and the doctors made that happen.
Kids and Teens:
- Don’t be scared to ask questions of your doctors about anything. As I got older, I even began to email Dr. Novacheck with questions. By doing this I was able to address concerns or get questions answered the moment they came up, and didn’t have to wait until my next appointment, which in many cases could have been months away.
- Make your thoughts and opinions known.
- Your hospital room is your home away from home after surgery. Make yourself comfortable there.
- Ask family and friends to visit, and bring things to the hospital from home. Having visitors makes the time go by faster. Having things to do helps pass the time and keeps you more relaxed through the recovery process, which can sometimes be very difficult.
Editor's note: Photo at top left is Betsy during a childhood t-ball game. Photo at bottom right is a current photo of Betsy and her best friend at a Target Field concert.