When Sister Wives' Maddie Brown Brush and her husband Caleb discovered they were pregnant
with their second child, doctors informed the couple that their unborn baby would be
diagnosed with oligodactyly, a congenital anomaly marked by the presence of fewer than
five fingers on a hand.
However, once they welcomed daughter Evangalynn Kodi, the newborn was also missing a thumb
and a toe, and one leg was missing a calf bone and a shinbone.
In addition, two of her fingers were fused together.
Doctors then diagnosed Evangalynn with a syndrome known as FATCO.
FATCO syndrome is an incredibly rare genetic disorder that affects the formation of a baby's
bones when they're in utero.
There is no known cause behind the diagnosis, and because of the disease's rarity, it's
unclear how the Brush's new daughter's future will look.
When Maddie went in for a routine ultrasound, her appointment, which should have taken less
than an hour, lasted over two hours.
Immediately, she knew something was wrong.
She told People,
"It usually takes about 45 minutes, but the doctor just kept looking and looking.
I was stressing out the whole time."
She recalls that the doctor finally met them in his office and revealed to the pregnant
mother that he couldn't find all 10 fingers, so he would be diagnosing her with oligodactyly.
At the time, she was relieved because she knew a lot more could have gone wrong.
Still, when Evangalynn was born on August 20th, the doctors and the couple knew there
were more issues.
The couple was shocked when they heard the official diagnosis.
The TLC star told the magazine,
"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."
Maddie, the daughter of Sister Wives' Janelle and Kody Brown, told People that while she
initially wanted to protect her daughter's privacy, she didn't want Evangalynn to feel
ashamed about her own condition.
Instead, she wanted to ensure that her daughter would feel proud of her differences as she
gets older.
5Just as her family celebrates their differences on the TLC show, Maddie wants her child to
be proud of who she is and where she comes from.
While congenital limb deficiencies like extra fingers or under-grown extremities aren't
uncommon in newborns, FATCO syndrome occurs in less than one out of every 1 million births.
There is little information on how the syndrome is treated, but usually, surgery and amputations
are used to help better the quality of the child's life.
Maddie revealed that because Evangalynn is still very young, the family will have to
wait before they can start any kind of treatment or surgeries until she turns 1 year old.
By then, her body will be more developed and the parents can decide on the next steps in
the baby's treatments.
Maddie did open up in a recent Instagram post about the situation, saying,
"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."
Despite the diagnosis, the couple are still thrilled to have a new addition to their family.
Maddie continuously shares photos and videos on her Instagram of her new baby as well as
the couple's son, Axel James, who is now 2 years old.
"I don't even know how to describe when I first saw him or held him."
When it came to deciding on the new baby's name, they looked to their family for inspiration,
telling People,
"We were trying to think of a family name.
[Caleb's] grandma's name was Eva, my mom's name is Janelle, and his mom's middle name
is Lynn, so we just put it all together and did Evangalynn."
They also decided to select Kodi as the child's middle name in honor of Maddie's father.
It's heartwarming to know that the Brush family isn't letting this diagnosis get in the way
of letting Evangalynn live a full and purposeful life.
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