After becoming a mom of two in August, Maddie Brush, one of the stars of TLC’s Sister Wives, has been fairly open about her transition to mom-of-two. She admitted that the lifestyle change has “kicked her a**,” but she knows she’s doing her very best to be the best mom she can be.
However, while opening up about that part of her life, Brush and her husband Caleb were dealing with more behind the scenes. The mom wrote on Instagram that she wasn’t sure if she wanted to share her newborn daughter’s health issues with the public but ultimately made the decision to do so nearly two months after her birth.
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On August 20, Brush announced that their daughter, Evangalynn Kodi Brush, was “born right on time and just right.” What she didn’t say at the time was that Evangalynn, who they affectionately call Evie, was born with a rare medical syndrome.
The couple said they knew about their daughter’s diagnosis prior to her birth, but they ultimately decided to share her diagnosis so that other families out there going through something similar can know they aren’t alone.
Brush explained on Instagram:
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. Our beautiful baby daughter Evie has been diagnosed with FATCO syndrome (basically the abbreviation for lots of intense Latin words). It’s a rare medical syndrome where bones in extremities do not fully develop.
It was during a routine ultrasound at 26 weeks gestation that Maddie and Caleb learned their daughter had oligodactyly, the presence of fewer than five fingers or toes on the hand or foot. So when they met their daughter for the first time on August 20, Brush admitted, “it wasn’t a complete surprise.”
“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. It was then that the doctor told us that they couldn’t find all ten fingers and diagnosed the baby with oligodactyly. Although this was better than expected, it was still heartbreaking news.”
However, when they initially received Evie’s diagnosis, the parents assumed it meant that their baby girl was missing one finger. But as Brush revealed on Instagram, “when Evie was born, Caleb and I found out our precious little girl was missing more than just one finger. She was missing three fingers, a toe, and her fibula. She also had a bowed tibia, a shortened forearm and some fusing in her fingers. It was at this point, the doctors diagnosed her with FATCO syndrome.”
According to the U.S. Department of Health and Human Sciences, FATCO syndrome is defined as a “rare, genetic, congenital limb malformation syndrome characterized by unilateral or bilateral fibular aplasia/hypoplasia, tibial campomelia, and lower limb oligosyndactyly involving the lateral rays. Upper limb oligosyndactyly and cleft lip/palate may also be associated.”
The odds of a child being diagnosed with FATCO syndrome is unclear. But Brush said they were told that there are “fewer than 10 recorded cases” of the syndrome and as a result, doctors don’t know what causes the condition.
Brush continued writing that she feared by sharing her daughter’s story, she “would become the target of mean jokes and cyberbullying.” However, the mom also didn’t want her daughter to think that by not talking about her diagnosis, they were ashamed of “something that makes her all the more special in our eyes.”
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She told People that she felt a lot of “mom guilt” after learning about Evie’s diagnosis.
She wondered what she did wrong, or what she could have done more of:
“There were lots of emotions — lots of, ‘What did I do wrong? Could I have done anything?’ Just so much guilt. But I was also relieved because there could have been a whole lot more wrong. […] 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.”
Brush said they will wait until Evie is a year old to decide what their next steps will be when looking into different surgeries that will help her daughter and also the possibility of amputation. Nonetheless, despite her diagnosis, 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. We want Evie to always feel pride in who she is, and all that God gave her!”