Maddie Brown Brush is ready to speak publicly about 2-month-old old daughter Evie's extremely rare medical condition that causes bones in the infant's extremities to not fully develop. The Sister Wives daughter took to Instagram Wednesday to reveal her second child with husband Caleb was diagnosed early on with fibular aplasia, tibial campomelia, and oligosyndactyly syndrome, also known as FATCO syndrome.
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"This is one of the hardest things that Caleb and I have gone through and the decision to share almost as difficult, but after a lot of consideration, we realized that it’s the best thing for our daughter and there is a chance it may help other parents who may also be struggling," she began, sharing the first photo of Evie in which her entire body can be seen.
"Our beautiful baby daughter Evie has been diagnosed with FATCO syndrome (basically the abbreviation for lots of intense Latin words)," she continued. "It’s a rare medical syndrome where bones in extremities do not fully develop."
Brown explains the diagnosis didn't come as a "complete surprise," as the parents were "aware of some abnormalities before 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," she recalled. "It was then that the doctor told us that they couldn’t find all ten fingers and diagnosed the baby with oligodactyly (fewer than 10 fingers). Although this was better than expected, it was still heartbreaking news."
Things changed for the family, however, after Evie's birth in August, when doctors saw she was missing three fingers, a toe and her fibula, also having bowing in her tibia, a shortened forearm and fusing in her fingers.
"We were hesitant to share Evie’s condition publicly for fear that our infant daughter would become the target of mean jokes and cyberbullying," Brown admitted. "That said, 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."
With "fewer than 10 recorded cases of her specific findings," Brown said doctors are unclear what causes FATCO syndrome, and that Evie is "healthy in every other way aside from the missing bones."
"As a family, we have decided to be open as we walk through this journey," she concluded. "We want Evie to always feel pride in who she is, and all that God gave her!"
The TLC personality was met with support from all sides after coming forward about her family's journey.
"You are a warrior!" one follower wrote. "Just give her endless love like you are!"
Another added, "She’s an amazing babe, and you two are amazing parents!"
"She is beautiful and perfect! I pray with you as you walk on this scary journey," still another wrote. "Thankful that you have a loving and supportive family to walk it with you."
Photo credit: TLC
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