Children who are born with birth defects often feel isolated and alone. They feel like none of the other kids their age understand what they’re going through.
Sometimes, these kids are hospitalized for their health issues — and for many of them, this is the first time they get to meet other children like themselves.
Cameron and Emily met this way in 1995. The two 4-year-olds were hospitalized at Johns Hopkins Hospital in Baltimore, Maryland, for a condition called bladder exstrophy.
Even though they were from different states, the two kids forged a bond. They became fast friends and kept up their friendship throughout the years.
Eventually, their relationship developed into something more, and they fell in love. They were only in high school, but they knew they were meant to be together.
For years, Emily and Cameron had a long-distance relationship. Nobody thought they would stay together, but they did. Then, in 2012, Cameron got down on one knee.
The happy couple tied the knot 20 years after they first met.
Emily shared their story on the Facebook page Love What Matters, where it immediately got a lot of attention.
Within less than 24 hours, the post had over 12,000 reactions and 400 shares.
My husband and I met at four years-old at Johns Hopkins Hospital in Baltimore, Maryland; scheduled to have the same surgery within days of one another. Cameron called Ohio home, Wisconsin was mine.
Both of us were bound to a hospital bed, introduced by the man who gave us back our health and gave us one another, world-renowned surgeon, Dr. Robert Jeffs. We share a birth defect called bladder exstrophy. Back in 1995, our parents could not have guessed this defect would abundantly reward us with a lifetime of blessings.
In 2006, after many years of friendship, we fell in love. I might argue I fell in love with Cameron in 1995, the first time he kissed me at the Ronald McDonald House. Our love was endless, relentless even.
People thought we were foolish through high school in a long-distance relationship, counting down the moments until we could start our lives together. We proved each of them wrong.
On November 21, 2012, Cameron got down on one knee, pulled an engagement ring from his cowboy boot and asked me to be his wife. In 2015, we had the wedding of our dreams, bought a home, and continued to fill our lives with everlasting love and laughter.
The days were getting better and better. I thought these would always be the best days of my life, until October 1, 2016.
Despite thinking we were ready to start trying for a baby two months prior, nothing could have possibly prepared me for what was about to happen. I realized I was a couple weeks late and took a pregnancy test while Cameron was at work.
Part of me wondered, ‘What I was thinking, taking the test alone?’ You know how the couple usually takes the pregnancy test together, impatiently waiting and staring at the stick changing colors like a chameleon on the bathroom sink? DO that, not alone.
As I suspected, a positive sign appeared after what felt like hours of waiting. I was undoubtedly excited, but it was also terrifying.
So many questions pulsed through my mind as I impatiently waited for Cameron to return from work, ‘Would our baby have bladder exstrophy? Cameron’s sense of humor? My terrible vision?’ I pondered every scenario until the workday was over.
When I told Cam, he shared in my excitement tenfold. As any new parents, the questions came. Especially that lingering question we couldn’t ignore: ‘Would our baby have bladder exstrophy?’
There is not a known case of both parents with bladder exstrophy having a baby together and little research to prove genetic connections. Scary, right? Absolutely. We found the best doctors and started to plan for the healthiest pregnancy with a special emphasis on finding that baby’s bladder.
First, our doctor thought we could visualize the bladder at 14 weeks. (Visualizing the bladder via ultrasound would ensure it was in its proper place (meaning no bladder exstrophy). No luck. Then came week 17… 19… and finally 21. It was quickly getting discouraging. We emotionally prepared ourselves that our baby would have bladder exstrophy and that was okay.
I will never forget January 10, 2017. The day before, I turned 26 and newly 21 weeks pregnant. The ultrasound technician slid the transducer over my growing belly, when our doctor told him calmly, ‘Stop. Right there. There it is!’
Comfort flooded every ounce of me. The bladder. We found it… ON THE INSIDE! This was a big deal, not only for us, but for many families with lingering questions for their BE kids, too.
The next 16 weeks passed quickly with nearly zero complications. The few I encountered weren’t even BE related… unless you count having to pee about every 15 minutes. (No, really… Every 15 minutes.) On May 23rd, at 37 weeks pregnant, we had our routine check-up; l prepared to deliver via scheduled Cesarean section the next week.
I waddled into the office swollen and uncomfortable, (fitting in with a family of beluga whales was not far from my reality). Our princess made her debut via C-section. Everleigh Grace weighed in at 6 pounds and 4 ounces of absolute perfection.
Although there were times when I wondered why Cameron and I were chosen to endure the pain that accompanies bladder exstrophy, I now understand. I would relive it 100 times over, to be rewarded with this crazy, beautiful life, alongside my incredible husband and beautiful baby girl.
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