Sister Wives: Maddie Brown on amputation of her baby girl’s foot

Sister Wives star Maddie Brown is giving fans an update on the health of her baby girl after revealing that she had to get her foot amputated last month. 

Maddie’s one-year-old daughter, Evangalynn ‘Evie’ Kodi, was diagnosed with fibular aplasia, tibial campomelia and oligosyndactyly (FATCO) syndrome, an extremely rare genetic disorder that affects limb formation during pregnancy. 

On Tuesday, the 24-year-old reality star addressed some of the questions that she has been asked since going public with her decision to go ahead with surgery.  

‘You cut her foot off?’ ‘If she was functional, why did you amputate?’ ‘Wait, where is her foot?’ ‘Was it really necessary to cut her foot off?’ These are all questions I have received since Evie’s surgery,’ Maddie began in her update to fans. ‘I understand the questions and at first glance, I would ask the same thing.’

‘Some families and people opt for a lengthening surgery, but Miss Evie’s difference was in the grey area of if that was even possible or not.’

She added: ‘With at least 4 major surgeries and the possibility of having to amputate in the end, we chose a Boyd amputation. This was not a light-hearted decision, we spent the better part of the last year educating ourselves, talking to doctors, prosthetists, other families, and other amputees as we came to the decision we did.’   

Ultimately, Maddie – who also has three-year-old son Axel with her husband Caleb Brush – said the decision was about her daughter’s ‘quality of life’ saying: ‘Due to this, I wanted to give a more in-depth explanation and answer all at once. I hope it will all bring awareness to a part of the world.’

Evie was born on August 20 last year, and Maddie and her husband both noticed that their baby was missing a thumb and a toe, while one of her legs was shorter than the other and had a bowed shinbone. 

She and Caleb decided to go public with the situation after realizing that this might 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),’ the mother of two wrote on Instagram at the time. 

Along with the post, Maddie shared a sweet photo of her baby girl in a diaper and an adorable yellow bow around her head. 

Her physical ‘abnormalities’ were visible in the precious snap and the reality star went on to explain how FATCO impacts Evie and what her pregnancy was like. ‘It wasn’t a complete surprise,’ continued Maddie, ‘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.’

Her OBGYN informed the expectant mother that the baby had oligodactyly, meaning she developed fewer than 10 fingers.

‘Although this was better than expected, it was still heartbreaking news,’ she said.

It wasn’t until the baby was born at the end of August, at 8 lbs. 12 oz. and measuring 21 inches long that she and her husband learned that the condition was more serious.

‘[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.’

FATCO is a rare, genetic, congenital limb malformation and the cause of the condition is unknown.

The syndrome is so rare that Maddie said she was only aware of less than 10 recorded cases similar to Evie. 

The Brushes were ‘hesitant’ at first to share their story out of a fear that their ‘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,’ the proud mother explained.

‘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!’

When the couple was first alerted to the diagnosis that the baby had oligodactyly she described feeling a mix of feelings.

‘There were lots of emotions,’ she told People, ‘but I was also relieved because there could have been a whole lot more wrong.’   

In addition to Evie, Maddie and Caleb are also parents to son Axel. 

Maddie’s mother Janelle is one of four sister wives married to her father Kody and featured in their hit TLC reality series.