Maddie Brown Brush, one of the stars of TLC's "Sister Wives," shared that her 2-month-old daughter has a rare genetic syndrome in which the bones in her extremities didn't fully develop.
Brush, 23, wrote on Instagram Wednesday that she and her husband, Caleb Brush, were aware that their daughter, Evangalynn Kodi, had some abnormalities before she was born on Aug. 20. But they did not learn about her full condition until after her birth.
"We knew something was wrong when we went in for a routine anatomy ultrasound at 26 weeks and what should have taken 45 minutes, ended up lasting a nerve-wracking two hours,'' Brush told PEOPLE. "It was then that the doctor told us that they couldn’t find all ten fingers and diagnosed the baby with oligodactyly (having fewer than 10 fingers). Although this was better than expected, it was still heartbreaking news."
After she was born, doctors diagnosed Evangalynn, who they call Evie, with fibular aplasia, tibial campomelia, and oligosyndactyly syndrome, known as FATCO syndrome.
She was born missing three fingers, a toe and a fibula (the thinner lower leg bone) while also having a bowed tibia (the thicker lower leg bone), shortened forearm and two fingers fused together.
"We were shocked," Brush said. "I was just sitting there trying to comprehend what’s going on, having just had a baby as they are bringing in all these specialists. I was freaking out."
The couple, who also have a 2-year-old son, Axel, was admittedly hesitant to publicly speak about Evie's condition.
"We felt not being open would be even worse and make Evie feel ashamed for something that makes her all the more special in our eyes,'' she wrote on Instagram.
Evie is healthy in every other way aside from the bone malformations, according to Brush, but her long-term future is a concern to the couple.
"How will she be at 70 years old?" Brush said. "Will this come back and haunt her? There’s still a lot of unknowns, which is hard."
The family has made a choice to share her story as she learns to live with FATCO syndrome.
"As a family, we have decided to be open as we walk through this journey,'' Brush wrote on Instagram. "We want Evie to always feel pride in who she is, and all that God gave her!"