When Maddie and Caleb announced the birth of their baby girl, they shared the usual details: Her full name, her weight and height, and some photos of their newest addition. Evangalynn Kodi Brush weighed 8 pounds, 12 ounces, and measured 21 inches long, according to People. And she was cute as a button.
It wasn’t until Oct. 23 when Maddie first opened up about her baby’s medical condition.
“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,” Maddie captioned an Instagram photo — which was the first wide-angle shot showing her baby’s hands and legs.
Maddie explained that Evie had been diagnosed with FATCO syndrome, a “rare medical syndrome where bones in extremities do not fully develop.” The mama bear also shared that she and Caleb were aware of some abnormalities before their baby was born.
“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 wrote. “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.”
After Maddie and Caleb’s baby was born, they learned she was missing three fingers, a toe, and her fibula. Evie also has a bowed tibia, a shortened forearm, and some 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,” Maddie wrote. “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.”
Maddie continued, “As far as we have been told, with fewer than 10 recorded cases of her specific findings, it’s unclear what causes the condition. She 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. We want Evie to always feel pride in who she is, and all that God gave her!”
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