By Emily Broeren
First and foremost, 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, I have loved since I was 4 years old. I enjoy singing at the top of my lungs, I am 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 UTI’S, and embarrassment, but has rewarded me with strength, memories, joy, irreplaceable friendships, and most importantly… my fiancé.
I was born on January 11th, 1991 at Kaukauna Community Hospital. The story never gets old. My parents were not sure if I was going to be Tony, the boy my dad had always wanted, or Emily, another Broeren girl that would make three. 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 could not answer. They were not 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, which 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, Maryland, 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 am 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 osteotomy 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. 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 to me to the greatest gift I couldn’t have dream 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 that 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 UTI’s will never hurt any less, but if at the end of that day, you’ve pushed through and won, it can only make you stronger, and it is 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 make it permanently stamped 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 did not 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 them to be accepting of all people. Most importantly, teach them to love themselves and to celebrate their differences. They are what make them beautiful.
© 2014 Emily Broeren
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12 Comments Add yours
I love what you wrote. You sound like a great, fun normal, special person!
Thank you for sharing your wonderful and inspiring story. My son was born with BE and also saw the late Dr. Robert Jeffs and Dr. G. It is encouraging to see you going on to get married next year and just want to say congratulations and many blessings to you and Cameron. We would love to hear his story sometime as well. All the best. Thank you!
Love you Emily! You are my BE little Sister! So proud of the woman you ARE!
Emily what an amazingly inspiring story! You are defined by your big heart, beautiful smile, amazing voice, and positive look on life. My mom gave me the same advice of treating others how you want to be treated. We missed you at Lexi’s graduation!!! Thank you for sharing your journey!!
Thank you so much for sharing! We have an almost 3 year old son with BE and it has always been important to my husband and me to teach him to not see his identity in BE. To us, it is just something that makes him unique,but it does not define him:-). As a mother, I find much much comfort in the words you shared!
hi rose.your storry is just like mine. i am 22 but not married.i was born with BE.i have elder sister and a brother.i didnot went school bcz of my BE.i had no control on my pee that time. my past was really pain full.i have no frends but i have nice family.when i read your life path i just remeber mine.now i am alrite with my B E GOD MAY BLESS YOU.
Emily – thank you so much for sharing your story. A child in my family was recently diagnosed with BE and your story gives me so much hope. I am trying to find support groups, resources, etc. to help support my family members. Do you have any suggestions?
I am curious if there are any BE kids that didn’t have the osteotomy and bladder neck reconstruction? I am one who did not and still have to catheterize everyday at the age of 34. Emily if you know of anyone or any resources that could put me in touch with any other BE patients, that would be great! thank you! and keep kicking ass and not letting BE get the better of you. 🙂 -Regina
Thank you for your story ! Your words are so true.
Noémie, born with BE in France, with fantastic parents and friends… !
Emily you are a beautiful writer. I am related to your Aunt Linda through marriage. Your Uncle Tony is my husband brother….anyway I remember when you were born and I used to write letters to your Mom when you were in. Maryland. Linda always keep me updated on your BE. You sure turned into a beautiful young lady. I felt some understanding in your writing since I am a Breast Cancer survivor and I never let that define me. I had my days and my moments but I was in no way going to let that define me. Our oldest daughter Holly had some of the same issues as you. UC caused her to have an ostemony a couple of times and went through Hell and back. The two of you would be good friends if you ever met. You and Cameron are very lucky to have each other and make a beautiful couple.
I am Jacqueline, 56 years of age I was born in 1963, having my first bladder exstrophy surgery in 1964 with several more to follow . It is wonderful to see the great strides made in treating this condition . It is even more impressive that this information and support is shared . Thank you to everyone for doing so . I was born in a time with little support or understanding of this condition but I always felt blessed to be alive . I surpassed many obstacles /complications . II have a daughter who is 25 and twin boys who are 20 years of age . All by c section and none with bladder exstrophy.. if I can help by sharing my story please feel free to share or contact me.