Maddie Brown has updated fans on Evie and what has been happening in their lives.
It has been a year since Evie was born and even less than that since Maddie opened up about what was going on with the baby girl. Their lives changed dramatically when she was born, and now, Maddie is giving Sister Wives fans an update.
What is going on with Evie?
Currently, Evie is recovering from amputation and surgery. Maddie Brown revealed that her little girl had a Boyd amputation of her foot. That is when everything from the ankle down is removed while the heel bone (calcaneus) and heel pad remain in order to provide better stabilization in the future when she is fitted for a prosthetic.
Evie is also recovering from her hand surgery. The doctors went in and worked on fixing the webbing in hopes that her hand would be able to be used more normally.
Just a little after her first birthday, Evie is on her way to healing. Maddie Brown has revealed that the prognosis for her baby girl is unclear. Not much is known about the rare genetic disorder Evie has, so they are taking things step by step and moving with the doctor’s guidance.
What happened with Evie’s birth?
When Maddie Brown was pregnant with Evie, she learned that there was something wrong. The little girl was diagnosed with FACTO Syndrome, a rare genetic condition that affects bone growth in utero.
The little girl was born without a thumb, toe, and two of her fingers were webbed together. The bones in her legs were also affected. One was completely missing and the other was bowed out.
There was nothing Maddie could have done to prevent what happened. The cause is unknown and because of the rarity, there is no way to prepare or know what to expect at the birth.
Maddie Brown and her husband, Caleb Brush, didn’t talk about their little girl’s issues right after she was born. It took them several weeks to explain what was happening and what would be expected moving forward.
View this post 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 wasn’t a complete surprise; we were aware of some abnormalities before birth. 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 (fewer than 10 fingers). Although this was better than expected, it was still heartbreaking news. . 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. . We were hesitant to share Evie’s condition publicly for fear that our infant daughter would become the target of mean jokes and cyberbullying. 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!
With the current update, Maddie Brown revealed there is progress with Evie and what she is facing. While they don’t know what will happen down the road, for now, her baby girl is doing as well as possible.
Janelle Brown has supported her daughter and granddaughter. Maddie Brown is the only one of Kody Brown’s children who has made him a grandfather. She also has an older boy, Axel, who was not born with FACTO Syndrome.
Sister Wives is expected to return to TLC later this year.