How My Birth Defect Led Me to the Love of My Life
My name is Emily Rose Broeren. I am 23 years old, 5 foot 4 and have blonde hair and blue eyes. I was born and raised in Kaukauna, Wisconsin, but now live in Massillon, Ohio. My family means a great deal to me and are some of the most awesome people (but craziest Packer fans) I know. I am in love with a wonderful man, Cameron Kohlman, who I’ve loved since I was 4 years old. I enjoy singing at the top of my lungs, I’m scared of the dark, and I love being an advocate for all kinds of equality. This defines me.
I was also born with a rare birth defect called bladder exstrophy.
This does not define me.
Bladder exstrophy has given me pain, anger, unwanted UTIs and embarrassment but has rewarded me with strength, memories, joy, irreplaceable friendships and most important… my fiancé.
I was born on January 11, 1991 at Kaukauna Community Hospital. The story never gets old. My parents weren’t sure if I was going to be Tony, the boy my dad had always wanted, or Emily, another Broeren girl. As any parent, they were impatiently waiting to see their baby. Everything about my birth went as planned until my mom asked, “Boy or girl?” The doctors couldn’t answer. They weren’t sure. All they saw was the bladder that protruded outside of my body. My condition was diagnosed shortly after, and I was transported to Children’s Hospital of Milwaukee for my first surgery.
My journey with surgery began just two days after birth. Doctors put my bladder back inside. For the next couple years, I led a pretty normal life with two older sisters, Jenny and Kelly, and got the blame for being the spoiled-rotten youngest sister, no matter what the heck was wrong with me.
In 1995, my fantastic parents, Todd and Sara, made the decision to consult with the late, world-renowned surgeon, Dr. Robert Jeffs, at Johns Hopkins Hospital in Baltimore to move forward with my bladder-neck reconstruction and osteotomy to achieve urinary continence. My surgery was a huge success and always has been. I’ve had a few other scar revisions, collagen shots and cystoscopies since then, but this was mostly by choice. With the help of Dr. Jeffs and Dr. Steven Docimo, I’m able to void without the help of a stoma or catheter, and I can hold my own pee. In the BE world, this is pretty earth-shattering.
My attitude about bladder exstrophy isn’t sour. I feel incredibly blessed. Without this birth “defect,” I wouldn’t have met the man I will marry in 2015, Cameron. He has BE, too! We met at Hopkins in 1995. After we both got our osteotomies done, Dr. Jeffs introduced our moms, and they hit it off. Soon enough, we did too. We spent most of our time in Baltimore at the Ronald McDonald House post-operations, confined to our wagons to keep our hips from moving. He was my playroom companion, the one I always got into trouble with, and my first kiss (without our parents knowing, of course!). We made so many memories I’d never forget.
Then, the time came for us to go back home. Cameron to Ohio, and Emily back to Wisconsin. We didn’t reunite until 2006. We fell in love again shortly after. Eight years later, here we are. We have a wedding to plan, a family in our dreams and a future with endless memories to be made. When I was little, I had always asked God to make my dreams come true. Little had I known, bladder exstrophy was it. It led me to the greatest gift I couldn’t have dreamt up myself — Cam.
Sure, I love my BE now, but it wasn’t always like that. Imagine being the chubby kid with glasses in elementary school. As if that isn’t bad enough, imagine being the chubby kid with glasses in elementary school who peed their pants. Yeah, it really sucked. I got made fun of endless times, of course, but had a good friend, Kayla, who stood by me (and still does) every day. Kayla didn’t care that I didn’t have a belly button or that I went pee 12,000 times a day. Kayla knew I was a good person (and so was she) and stuck with me. It took me a while, almost 20 years, to see what Kayla saw in me.
I have my flaws. Sometimes, I hate my body. Some days, I want to just be able to go two hours without having to pee. But most of those times, I know it could be worse. I am living, breathing, happy, healthy, surrounded by a supportive family, and in love. The hospital food will always suck, the long nights won’t get any shorter and the endless IV pokes and UTIs will never hurt any less, but if at the end of that day, I’ve pushed through and won, it can only make me stronger, and it’s worth it.
If I have one piece of advice to share with parents of BE kids, it’s this:
Bladder exstrophy is not your child. Your child is beautiful, strong, remarkable, smart, silly, heart-warming, unique. The list is endless. Don’t stamp the diagnosis permanently on their forehead. If you treat them different, chances are the kids at school will too. The best thing my parents ever taught me is to treat every single person in this world how you would like to be treated. I certainly didn’t want to be treated like the chubby kid with glasses who peed her pants. I wanted to be treated like the girl who was nice to everyone, sang loudly and always tried to make people laugh. Educate your children to be accepting of all people. Most important, teach them to love themselves and to celebrate their differences. They are what make them beautiful.
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