Bethanne’s Story

This story was written by Bethanne’s mother, Lena.

This is the first time I’m writing about our family’s story. We are Aden and Lena Troyer, and we had two daughters, Karen and Bethanne (deceased).

On November 23, 2016, we were blessed with a little girl, who we named Bethanne. She weighed 6 lbs. 7 oz., and was 19 ½” long. She was born at the Care Center in Middlefield, Ohio, and the doctor there told us she had a heart murmur.

We tested Bethanne right away for Troyer syndrome, as our first daughter Karen has the disorder. Bethanne’s results came back, and to our relief, she didn’t have Troyer syndrome. What we didn’t know at the time was that Bethanne had cardiomyopathy.

For the most part, Bethanne was a happy baby, but she still had her fussy times. A week before we took her to the hospital, she started not eating well. On the last night she was at home with us, which was a Sunday, she cried almost every hour. We were with family that day, and Bethanne just kept on not wanting to eat and crying. We thought we’d take her to the doctor on Monday.

Bethanne’s four cousins had passed away from hypertrophic cardiomyopathy. The cousins’ Mom, who was with us that Sunday, listened to Bethanne’s breathing and said that she thought Bethanne acted like her babies who had cardiomyopathy. We decided to take Bethanne to University Hospitals Rainbow Babies and Children’s Hospital in Cleveland. Once there, we told the doctors about Bethanne’s cousins.

Bethanne was put into the pediatric intensive care unit. After the doctors checked her out, they told us her kidneys were shutting down, and they thought she had cardiomyopathy. We were with Bethanne at the hospital for a week. The first evening, they put her on a breathing machine, and then a couple of days later, they put a feeding tube in. One night they gave her more blood, and her coloring got better. The doctors told us that they could test for cardiomyopathy to see if it was genetic, but it would take some time to get the results.

I called Dr. Wang at DDC Clinic and told him what was happening. He said he still had some of Bethanne’s blood from when she was tested for Troyer Syndrome, and he told us the clinic’s lab could check right into it. I didn’t tell the doctors at Rainbow that we had called Dr. Wang.

The next day, Dr. Wang called us and said Bethanne had cardiomyopathy. When we told the doctors at Rainbow, they were very surprised to hear that Dr. Wang had tested for this and had the results so quickly.

The doctors and nurses at Rainbow gave Bethanne excellent care, but her condition grew worse. On Saturday evening, the doctors removed the machines from Bethanne. She passed away Sunday morning, March 19, 2017 at 9 a.m. We had three months and 24 days with our sweet daughter.

My husband and I are both carriers of the cardiomyopathy gene. Some of my family and my husband’s family are also carriers. We thank Dr. Wang and his team for everything they did for us and still do for us.

Today, our daughter Karen is the sunshine of our lives, and she’s looking forward to her next birthday. We miss our Bethanne, but we hope to meet again someday.

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