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What It's Like Being Married to a CHD Warrior

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About five years ago, my husband and I had bought a new house and were in the process of remodeling the kitchen. The one request that he had was “no white cabinets.” This was not simply a matter of taste; white cabinets reminded him of sterile medical facilities. My husband was born with a complex heart defect (single ventricle with transposition of the great vessels) and had grown up with surgeries, procedures, and doctor appointments.

When he was born in the 1970s it was very uncertain if, or how long, babies like him would live. I give my mother-in-law infinite credit for fighting for him in so many ways, especially in an era when less was understood about his condition. My husband grew up defying the odds. He has traveled the world, earned a college degree as well as many professional certifications, has achieved success in his field, and we have been blessed with a wonderful family.

Knowing my husband only as an adult, my direct experience with his medical treatments had been very limited. I knew that when I went with him for periodic blood draws, my normally mild-mannered, kind spouse became extremely agitated and fearful. When he would bolt out of the room into the hallway I would follow behind, often noticing sideways looks and stifled snickers from staff and other patients in the waiting room. If only they knew what he had been through.

But I didn’t know much myself as he didn’t like to talk about what he went through as a child, especially the open heart surgery he had as a teenager. We made a few adjustments in our life together. We had to prevent him from being in hot, humid conditions, or he could get very sick. When we went swimming, he always wore a shirt. We dutifully referred to nutritional labels for the sodium content. However, our day-to-day life was pretty ordinary and we kept busy with our jobs, kids, and life like most families.

My husband would attend appointments with his electrophysiologist in a neighboring state twice a year. He was given a good report at these appointments. I wasn’t always able to go with him because of timing, our kids’ schedules, and work. About two years ago, the medical facility hired a doctor to start a new adult congenital heart disease program. To be honest, we hadn’t even heard of that specialty before. This doctor ordered new tests.

After one appointment, my husband called me from the car and told me that he would have to have another surgery. This was so unexpected that I thought that he was joking. It wasn’t until he started crying on the phone that the magnitude of the situation hit me. Ever since that day, I haven’t been able to forgive myself for not going to that appointment with him. I haven’t missed one since.

Fast forward to today and we are one year past his open heart surgery. Our kids, now teenagers, have been troopers through it all, including the two months I lived with my husband in the hospital that was two and a half hours away, and my generous parents moved in to our house to take care of them. My husband and I have also grown closer to his parents who faithfully stayed in a hotel near the hospital for weeks after the surgery, and then visited often after that.

There were some scary times post-surgery, but my husband’s remarkable faith in God and his perseverance are unlike anything I had never witnessed before. I have more admiration and love for him now than ever, and I can honestly say that our marriage is stronger after everything that we have been through. We are aware that there will be more procedures and possibly surgeries in the future. We are even more vigilant about his health, we consider his doctors and staff as members of our family, and we are tied into organizations like the Adult Congenital Heart Association that now exist to support congenital heart disease survivors and their families. We used to joke about getting old, but now we are much more cognizant that every day is truly a gift.

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Originally published: November 1, 2017
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