‘Sister Wives’ Star Maddie Brown Reflects on Daughter Evie’s FATCO Diagnosis: ‘I Was Blindsided’

Opening up. Sister Wives star Maddie Brown reflected on the moment she learned her baby girl, Evangalynn, would be born with a rare medical condition called fibular aplasia, tibial campomelia and oligosyndactyly (FATCO) syndrome.

“I remember getting out of the anatomy ultrasound in shock. #Limbdifference was so not on my radar. I was blindsided by it. I couldn’t even pronounce #olygodactyly or #syndactyly correctly,” the 24-year-old wrote in the caption of a sonogram taken while her daughter was still in the womb. “Once the shock wore off, I felt guilty. I wondered if I had done something wrong. ‘Did I eat something wrong? Did I not provide enough circulation? Did I sit around too much?’ All the things ran through my head.”

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I remember getting out of the anatomy ultrasound in shock. #limbdifference was so not on my radar. I was blindsided by it. I couldn't even pronounce #olygodactyly or #syndactyly correctly. . . Once the shock wore off I felt guilty. I wondered if I had done something wrong. Did I eat something wrong? Did I not provide enough circulation? Did I sit around too much? All the things ran through my head. I was sad and immediately started thinking about how different her life might be than what I expected. (I think EVERY parent does this throughout their child's life though.) I then felt more guilt that I was even so upset. I kept reminding myself that things could be a lot worse. I felt frustrated that I was even so upset when all her major organs we're looking normal and healthy. It was a whirlwind of emotions that I made myself shut up and be grateful that everything else looked ok. . After Evie was born Jan Reeves @bjrorg told me that IT WAS OK TO MOURN THE LIFE I THOUGHT EVIE WOULD HAVE. Those are words I think EVERY parent needs, especially those parents who parent children with a little extraness. After the ultrasound that was the firs time I allowed myself to really have a feeling on it other than "it is what it is." We all want to give our children the best fighting chance. Most times that best fighting chance is different that what we think it should be. Evie's life will look different than I thought and that's OK. She was #bornjustright to live the life that gives her the best fighting chance. . . . #bornjustright #limbdifferenceawareness #limbdifferencepride #luckyfinsrock #advocatelikeamother #FATCO

A post shared by Maddie Brush (@madison_rose11) on Apr 4, 2020 at 4:36pm PDT

The mama went on to explain that she felt sad and she started to think about how FATCO syndrome would affect little Evie’s life and how Evie’s life would different than what Maddie expected. She then started to feel guilty that she was so upset over the diagnosis.

“I kept reminding myself that things could be a lot worse,” the brunette beauty continued. “I felt frustrated that I was even so upset when all her major organs [were] looking normal and healthy. It was a whirlwind of emotions that I made myself shut up and be grateful that everything else looked OK.”

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Maddie welcomed Evie on August 20, 2019, her second child with husband Caleb Brush. Their daughter was born without a thumb, toe and two of her fingers are fused together. She is also missing a fibula (commonly known as the calf bone) and also had a bowed tibia (shinbone) in one leg. But Maddie did not reveal little Evie’s FATCO diagnosis until October 23, 2019, and she previously admitted she was reluctant to do so.

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But she said her work with an organization called Born Just Right helped her to realize it was okay for her to feel sad or upset about Evie’s diagnosis.

“After Evie was born Jan Reeves @bjrorg told me that IT WAS OK TO MOURN THE LIFE I THOUGHT EVIE WOULD HAVE. Those are words I think EVERY parent needs, especially those parents who parent children with a little extraness,” Maddie continued. “After the ultrasound that was the first time I allowed myself to really have a feeling on it other than, ‘It is what it is.’ We all want to give our children the best fighting chance. Most times that best fighting chance is different [than] what we think it should be. Evie’s life will look different than I thought and that’s OK. She was #bornjustright to live the life that gives her the best fighting chance.”