A Letter to the Doctor Who Committed Medical Malpractice

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I was born on October 20, 2001. My parents were expecting identical twin girls and my mom had been at the hospital, on bedrest, for the past 5 weeks due to an incompetent cervix.

You were the doctor who consulted with my mom’s doctor. She had an infection in her placenta and you made the decision to take her off of the medication that was keeping the infection from spreading and keeping my sister and I from coming.

She began complaining of contractions on October 19, but the contraction monitor had been broken for a while, so no one believed her.

My sac was closest to her placenta, so as the infection spread, I came down with it, causing brain damage.

The next day, my mom was rushed to Labor and Delivery, and my sister and I were born shortly after, at 28 weeks and 4 days.

We were in the NICU for 2 months and at my 1 month scan, the doctors noticed brain damage.

From there, I was diagnosed with Spastic Diplegia Cerebral Palsy.

My family was shocked and devastated and our lives changed in an instant.

However, the rest of my family was there to support me and my parents.

My grandparents were retiring soon and had planned to move to our vacation house in Virginia Beach full time, but decided to stay here to help care for me and support me as I got older.

My aunt and uncle were seniors in college and getting married after graduation, as well as planning to move out of state.

However, they decided to stay here to support me after they heard about my diagnosis. Although I have an amazing, supportive family, it didn’t change the fact that I grieved when I realized I was different.

During my time in the NICU, doctors told my parents that I would never walk, talk, sit etc. and that I would be a vegetable for the rest of my life.

I learned how to sit up independently at 16 months and started talking at 2 ½. I walked with a walker full-time until the age of 6. I’ve been in a mainstream classroom my entire school career and have been tested as “gifted” for reading and writing.

I attended the gifted program until I transitioned to private school.

I’ve taken honors classes in both public and private school and continue to do so. In a few weeks, I’ll be a junior in high school and begin my summer break.

My parents told me bits and pieces of what happened when I asked at an age appropriate level. However, I didn’t realize that medical errors were the cause until a few years ago.

I’ve struggled with depression for the past six years due to coping with the emotions of living with a life-altering condition that could’ve been prevented.

Knowing that people who had extensive training in the medical field made such a big mistake, makes dealing with it even harder.

I thought I would share some of the challenges that I face daily, so you can gain insight, as well as to remind you to be even more careful and attentive to patients, especially when unborn babies are involved.

I used a walker to get around until the age of 6, when I broke my foot. I was wheelchair bound for 6 weeks and unable to bare weight.

While my foot was healing, I had a major growth spurt, so when I tried to walk again, I had to hold up a significantly larger amount of weight.

I then underwent a major surgery to fix my hips, which had been dislocated for most of my life due to the spasticity in my legs.

Coming back from all of those setbacks was hard, and I’ve since been wheelchair bound. Setbacks are very common for people with brain injuries, let alone any disability.

I mentioned these setbacks because that leads me to where I am now.

As I said before, I am wheelchair bound full-time. I struggle with chronic migraines, chronic constipation, bladder control issues, spasticity, and many other things due to cerebral palsy.

I need assistance to complete all activities of daily living including dressing, showering, and toileting.

I’ve undergone several major surgeries and spend a large amount of my time in therapy centers and hospitals. I also struggle with insulin resistance due to prematurity.

I see a variety of specialists including an orthopedist, an endocrinologist, a neurologist, and a physical medicine and rehabilitation specialist.

Due to my bladder control issues and chronic constipation, my grandmother often has to come to school to assist me when I have accidents.

Even though the door is closed and no one can see, there is nothing more humiliating than laying on the bathroom floor at school and being changed at 16 years old. I also have to have a scribe for two of my academic classes.

This can be hard because sometimes it makes my classmates look at me differently.

However, I’m able to attend  four academic classes independently. This is a huge accomplishment for me because I started out my school career with a full-time aide.

However, I still have a dream to finish high school attending all classes independently.

Unfortunately, this may not happen due to my inability to handwrite and my gross motor issues.

I will also most likely always need help with activities of daily living, requiring someone to come in and help me get dressed and ready before heading off to my college classes or my job.

Although I will still be able to maintain a high level of independence even with this help, it bothers me to have to rely on someone for everyday activities like that.

I’ll continue pushing myself in honors classes and begin applying to college next year.

I’ll also continue exercising my passion for handcycling and advocating for others with disabilities.

As you can see, I don’t let cerebral palsy stop me.

Thank you for taking the time to read this letter.

I know that by reading this, you will change the lives of many children and families in the future, should they end up in a similar situation.

If you have any questions, please don’t hesitate to ask.

Written by, Taylor Bernard

I live in VA and I have Spastic Diplegia Cerebral Palsy. My mission is to advocate for others with disabilities. You can follow my blog at dazzlinglydifferent.blogspot.com or find me on Facebook at facebook.com/taylorsjouneywithcp.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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