Maddie Brown Brush Says She Feels Guilty About Her Daughter's Rare Limb Condition

  • Sister Wives star Maddie Brown Brush is opening up about her daughter’s health.
  • She says she has “mom guilt” over her daughter’s rare limb condition.
  • The genetic disorder was diagnosed 24 hours after her daughter was born.

Sister Wives star Maddie Brown Brush recently revealed that her daughter has a rare condition that causes her limbs to be malformed. Now, Maddie revealed in a new interview, she has mom guilt over her baby’s condition.

Maddie told People that she and her husband Caleb learned during a routine ultrasound during her pregnancy that their daughter Evangalynn Kodi had oligodactyly, a congenital anomaly defined as the presence of fewer than five fingers or toes on a hand or foot.

“I was stressing out the whole time,” admits Maddie said. “It was mixed emotions because I’m like, ‘I’ll take less than 10 fingers,’ but also nobody wants to hear that their daughter is going to be born without all of her fingers.”

Maddie said she had “lots of emotions,” including wondering what she did wrong and whether she could have done anything differently. “Just so much guilt. But I was also relieved because there could have been a whole lot more wrong,” she said.

Evangalynn, who is called Evie, was born on Aug. 20, and she was missing a thumb and a toe. She was also missing a fibula (calf bone) in one leg, had a bowed tibia (shin bone), and two of her fingers were fused together.

The baby was diagnosed with fibular aplasia, tibial campomelia, and oligosyndactyly (FATCO) syndrome, a very rare genetic disorder that impacts the way bones are formed in utero. There is no known cause.

“We got her diagnosis about 24 hours after she was born,” Maddie said. “It’s a genetic disorder so it’s just something that happens and they don’t know why.”

But even so, “I’m sitting there and I’m like, ‘Oh, what did I do? Did I drink too much soda pop?’ And I’m feeling guilty and freaking out [that] there’s something wrong with my daughter.”

Maddie also opened up about Evie’s diagnosis in an emotional Instagram post. “We were hesitant to share Evie’s condition publicly for fear that our infant daughter would become the target of mean jokes and cyberbullying,” she 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 also wrote that Evie is “healthy in every other way” aside from her condition. “As a family, we have decided to be open as we walk through this journey,” she said. “We want Evie to always feel pride in who she is, and all that God gave her!

Maddie told People that the family has to wait until Evie turns one to make decisions about her condition so that her body has more time to develop. At that time, they’ll consider surgery and amputation. “There will be limitations, but not huge hindrances,” Maddie said. “It’s abnormal, and it catches people off guard, but I want her to grow up and feel proud about who she is. If I’m hiding this to protect her, is it really helpful?”

Source: Read Full Article