A rare birth defect brought these childhood sweethearts together

Emily Kohlman was only four-years-old when she first met Cameron — the little boy who would in years to come become her loving husband and the father of her beautiful baby girl. But it was a rare disease that brought these soulmates together 22 years ago, when they were being treated for bladder exstrophy at Johns Hopkins Hospital, in Baltimore, Md.

It was 1995 and the two four-year-olds were scheduled to have the same surgery within days of one another. Emily shared their touching story with the Love What Matters Facebook page.

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“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.”  (Photos: Facebook/Love What Matters)

“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 heath and gave us one another, world-renowned surgeon, Dr. Robert Jeffs. We share a birth defect called bladder exstrophy,” wrote Emily.  Bladder exstrophy is a rare birth defect where the bladder develops outside of the body through an opening on the abdominal wall.

“But back in 1995, our parents could not have guessed this defect would abundantly reward us with a lifetime of blessings.”

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In 2006, in their teens, Emily and Cameron 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,” said Emily. “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 Nov. 21, 2012, Cameron got down on one knee, pulled out an engagement ring from his cowboy boot and asked Emily to be his wife. In 2015, they had the wedding of their dreams, bought a home, and continued to fill their lives with everlasting love and laughter.

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In 2015, Emily and Cameron had the wedding of their dreams, bought a home, and continued to fill their lives with everlasting love. (Photos: Facebook/Love What Matters)

“The days were getting better and better. I thought these would always be the best days of my life, until Oct. 1, 2016.”

Despite thinking they were ready to start trying for a baby two months prior, Emily says that nothing could have possibly prepared her 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 colours like a chameleon on the bathroom sink? DO that, not alone.”

As she suspected, a positive sign appeared on the test 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 humour? My terrible vision?’ I pondered every scenario until the workday was over.”

When she told Cameron, he shared her excitement. But as with many new parents, the questions came — especially that lingering question they couldn’t ignore.

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There wasn’t a known case of both parents with bladder exstrophy having a baby together.  (Photo: Getty)

“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.”

So the couple found the best doctors and started to plan for the healthiest pregnancy with a special emphasis on finding that baby’s bladder. First, their doctor thought they 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,” Emily said. “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 OK.”

On Jan. 9, 2017, Emily, now 21 weeks pregnant, turned 26. The following day she went for an ultrasound and the technician slid the transducer over her growing belly, when her doctor said, “Stop. Right there. There it is!”

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“Everleigh Grace weighed in at 6 pounds and 4 ounces of absolute perfection.”  (Photo: Facebook/Love What Matters)

“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 (bladder exstrophy) kids, too.”

The next 16 weeks passed quickly with nearly zero complications. The few she encountered weren’t even bladder exstrophy related — “unless you count having to pee about every 15 minutes.”

On May 23, 2017, at 37 weeks pregnant, Emily went in for a 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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