Maddie Brown is opening up about the rare disorder her two-month-old daughter Evangalynn Kodi was born with.
The Sister Wives star— who is the daughter of Kody Brown and his second wife Janelle— told People that when Evangalynn was born on August 20, the baby was missing several fingers, a thumb, a toe and a fibula in one leg. In addition, two of the baby’s fingers were fused together, and she had a bowed tibia.
Doctors later diagnosed the baby with fibular aplasia, tibial campomelia and oligosyndactyly (FATCO) syndrome, which, according to People is an extremely rare genetic disorder that affects bone formation in utero.
Maddie said that she and her husband Caleb Brush were first told that the baby may have issues during Maddie’s 28-week ultrasound.
“That’s when [the doctor] told me, ‘I can’t find all 10 fingers,'” Maddie said. “There were lots of emotions but I was also relieved because there could have been a whole lot more wrong.”
However, the full scale of Evangalynn’s issues were visible at her birth.
“We were shocked,” Maddie said. “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.”
In an Instagram post on Wednesday, Maddie explained in more detail how she felt before and after her daughter’s diagnosis.
“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 wrote. “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.”
“But 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.”
Maddie– who is also mom to two-year-old son Axel— told People that because her daughter’s condition is so rare, her doctors are unsure how her body will develop. After Evie turns one, more options will be available to them, including surgery and amputation.
“There will be limitations, but not huge hindrances,” Maddie said, adding that some people don’t know how to react when they see Evie. “[Her malformations are] 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?”
In her Instagram post, Maddie opened up about why she was unsure about going public about Evie’s medical issues.
“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. .. 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!”
Maddie’s mom Janelle also posted her thoughts on her granddaughter’s condition.
“Maddie and Caleb have been blessed with a very special little girl. My love for her is fierce,” Janelle tweeted.
Evangalynn was actually named, in part after Maddie’s parents.
“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,” Maddie said in August. The couple also looked for some family inspiration when selecting a middle name for their daughter, ultimately deciding on Kodi, in honor of Maddie’s dad.
(Photos: Instagram)
34 Responses
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My niece had a baby girl born with no fingers on one hand.She is now 4years old and nothing stops her.She is so loving and not ashamed to let people see her hand. We just tell her God made her special
Your right people can be very mean. But you have a beautiful little girl. My prayers go out to you and pray her journey isn’t a hard one.
Congratulations Maddie and Caleb on the birth of your baby girl.
But one can’t help but wonder with all that polygamy going on is there any chance that it could have been caused by genetics.
I know Maddie had made up her mind early on that she wasn’t interested in Polygamy but her ancestors were.
This is a stupid question, but why are they referring to her as Maddie Brown when her name is Maddie Brush now? And has been for over 3 years now.
I have to say that out of the whole Brown bunch, Maddie seemed like she really had a good head on her shoulders. Caleb and Maddie seem very much in love. I wish them all the happiness of the world. I’m thinking the baby may have to undergo some type of surgery for her leg. Unfortunately, if that is the case, she would probably need multiple surgeries and extensive physical therapy.
That is my fear for her as well.
I think potential bullying will be the worst of it for her. She’s lucky to live in a time and place where she can be accommodated and go on to leave a happy and successful life.
Best of Luck to you Evie
You are right. Bullying will most likely be something she will have to deal with. I just hope she will be raised with a strong backbone and will be able to defend herself and not be too emotionally hurt by it.
I have seen too many people take bullying too far, the bullied person can’t take it and ends their lives.
My cousin was one of them. He had always been made fun of because of his weight. And one day when he was 14 he missed school. And being 17 myself, I didn’t think anything about it. I just got his assignments and brought them to him after school. His parents hadn’t come home from work yet so I went to his room where I expected to find him sleeping but when I opened the door I found him hanging from his closet door.
The image of him hanging there will FOREVER be engraved in my mind.
@Abra…I cannot imagine the horror and pain of your experience. Some wounds never fully close either. You have my fullest sympathy and a hope that you find some degree of lasting comfort. Hugs.
Thank you. I appreciate that.
As someone who experienced bullying in school as well (they were mostly weight and appearance related), I can tell you I too have thought about killing myself at the raw age of 12. (I admit this to very few people) I just waited in the middle of a busy road at our house to get hit but surprisingly no one came (As I said, usually it was really busy). I guess it was not my time and I took it as a sign I don’t deserve to die. That’s why I always get when a teenager kills himself-not because they should but because you are most vulnerable at that age.
For years I am still struggling with anxiety and thinking people hate me the first time they see me and I try not to take comments too personally but it’s hard. At the time I needed support of people around me, no one came. Even my friends at that time were with me out of sympathy I believe. (Even the most popular girl in school then)
I go to therapy regularly because I know the verbal abuse I took at that age made me the kind person I am now. I even work in social services now, I just love to help. I guess it’s because no one helped me in the past. (My parents are great but as a child I think you want to be accepted by your peers as well)
I hope kids won’t be as mean to her as they were to me, bullying needs to stop, parents need to teach their kids it is NOT OKAY to make fun of someone regardless of how they look like!
Abra, my deepest condolences even if it was years ago. Your cousin didn’t deserve to die.
Wow! That’s amazing! You are now actively helping others! That’s pretty awesome! I was bullied in school and tried to do the right thing…I told my parents, teachers, assistant principal, principal all for them to do nothing. When I was 14 my brother died a horrific death. I told the girl across the street that he had been cremated and it upset me because I just wanted to see him one last time. When I got to school the next morning someone had carved “You are such a b!tch you probably burned your brother alive”.For the remainder of the school year I was taunted mercilessly daily. Again, no one did anything. I would hear “sticks and stones may break my bones but words will never hurt me”.
Ugh! Words hurt more than anything. I decided I was never going to be bullied again. I started beating the sh!t out of people and developed a reputation of not messing with me. It changed who I was as a person and I hated that.
I know this comment is to @A but I just wanted to say that I empathize with you about the “developing a reputation of not messing with you.” And that it changed who you were as a person.
I don’t physically lash out at people but I very much so lash out verbally.
I don’t know what it is, but it’s like a switch gets flipped inside of my head and I know I’m lashing out at people for saying shit about me or other people.
Alot of that has come out on this site. I don’t mind someone disagreeing with me but the second someone says about ME or making fun of someone for feeling a certain way, it’s like I turn into a volcano that is ready to erupt!!
I don’t know what is wrong with this everloving phone. But that is supposed to say “…before I know it I am lashing out at people…”
I lost my favorite cousin to suicide in 2006. I’m not going to say I’m sorry for you…mostly because I wanted to punch people who said it to me after my mom and cousin died because that’s all anyone would say to me. I will say, I understand and, even though we don’t always agree when it comes to a certain Teen Mom…I wouldn’t wish that pain on anyone EVER. I hope you and your family have been able to heal. You won’t forget but the pain gets better over time. Just always remember the good times. Sending positive vibes your way.
Thank @A and @EMMATHEREVELATOR. It is still hard, even now, I’m 32 and he would’ve been 30 last week.
His parents and our family have been amazing. But everyone’s advice to him prior to his departure (I have to use the word departure because I absolutely hate the word death. To me he isn’t dead. He is still with me. Our memories together are still with me) was “ignore it and this too will pass. Well I have one word for those that think that is correct. And that is “BULLSHIT”. Ignoring will not make the pain of it being said go away!!
I am deeply sorry, Abra! No one should ever have to find their loved one like that. I completely agree with you about the bullying. I feel like no one truly does anything about it. There are zero repercussions for these assholes that drive people to commit suicide. My child’s schools had “a zero tolerance for bullying” but did nothing. I eventually took my child out and homeschooled. It’s horrific! How many more lives are we going to lose?
Yes it is horrific. And I’m afraid are going to lose far too many more lives in our schools. And not just to bullying!! For instance school violence!
Absolutely! It’s terrifying just sending your child to school. It seems like it’s just getting worse and worse. Makes me so sad.
Me to @GEMMA.
My best friend’s were 5 and 7 at the time of the Sandy Hook Elementary school shooting. I forget now why they stayed home from school that day, but they saw the Breaking News Coverage of that on the news and for a week straight the 5 year old was petrified to go to school herself because she “just knew” that the same thing was going to happen at her school!!
Children*
Ugh, that’s really hard. She is a beautiful baby though and it sounds like she will still have a full life.
I hope she does have a full life ahead. And I hope it’s not as full of physical pain as I’m afraid it will.
I can’t imagine having to face something so rare regarding my child. Let’s all hope that by sharing their journey, this family can find more resources and support to help them and baby Evie. I think that by talking about something like this and not hiding it/being “ashamed”, makes it easier to deal with. She will hopefully give other parents and children with similar ailments the confidence and support that they need too!
They were probably worried about the backlash they would receive because of the way Maddie’s parents have chosen to live THEIR lives.
But you’re right, they shouldn’t have hidden it or been ashamed. As the song says, “What Makes You Different Makes You Beautiful…”. This child is a gift from God and they should cherish her.
Maybe now that they have shared this with the rest of the world they can get the support they deserve.
I’m so sad for them, that they felt the need to hide this. What a sick world we live in that we have to fear for our infants being ridiculed for being born different.
She’s still beautiful.
OMG, this baby is soooooo stinkin cute. It saddens me that this world is so cruel that they felt they had to hide. I hope this baby excels beyond what they think may or may not happen. There is nothing wrong with her in my eyes.
That poor child. I may not agree with the lifestyle the family lives, but I HATE it when a child suffers physically.
It is her parents that live a controversial lifestyle. Maddie and Caleb live as a monogamous couple, multiple states away from her parents.
That’s what I meant “Maddie’s family” (her dad and moms), not Maddie’s current family.
And I thought they lived in the same neighborhood because when Maddie gave birth to Axel, most of the family was there. Have they moved since then?
Hi Abra,.
Maddie and Caleb moved to NC. The Kody Brown bunch moved to Arizona. They were all in Las Vegas when Axel was born
Stormy,
Okay. Thank you for the clarification.