About five months after Maddie Brown revealed to the world that her daughter has a rare medical condition, the Sister Wives star has given fans a glimpse of what it was like to actually learn this for herself.
As you might expect, it was very challenging.
Brown welcomed her second child, Evangalynn, in August.
In October, she told followers that the baby girl was born with a fibular aplasia, tibial campomelia and oligosyndactyly (FATCO) syndrome.
This is a condition in which bones in extremities do not fully develop — and it only happens somewhere between five to 20 times for every million births.
Here is a photo of Evie from last year:
“I remember getting out of the anatomy ultrasound in shock. #Limbdifference was so not on my radar,” wrote Maddie yesterday, along wiith an ultrasound photo.
“I was blindsided by it. I couldn’t even pronounce #olygodactyly or #syndactyly correctly.
“Once the shock wore off, I felt guilty. I wondered if I had done something wrong. ‘Did I eat something wrong? Did I not provide enough circulation? Did I sit around too much?’
“All the things ran through my head.”
Tragically, immediately upon seeing her newborn, Maddie knew something was amiss.
“She was missing three fingers, a toe and her fibula,” she said this past fall. ‘She also had a bowed tibia, a shortened forearm and some fusing in her fingers.”
Maddie, 24, is the daughter of Kody Brown and Janelle Brown.
She is also the mother of a two-year old son named Axel.
Continue Maddie in her candid new post, thinking back to the summer of 2019 and this diagnosis:
“I was sad and immediately started thinking about how different her life might be than what I expected. (I think EVERY parent does this throughout their child’s life though.)
“I then felt more guilt that I was even so upset. I kept reminding myself that things could be a lot worse.
“I felt frustrated that I was even so upset when all her major organs we’re looking normal and healthy. It was a whirlwind of emotions that I made myself shut up and be grateful that everything else looked ok.”
Since initially telling the public about her child’s syndrome, Maddie has teamed with an organization called Born Just Right, leaning on it for guidance and support.
“After Evie was born Jan Reeves @bjrorg told me that IT WAS OK TO MOURN THE LIFE I THOUGHT EVIE WOULD HAVE,” she wrote on Sunday.
“Those are words I think EVERY parent needs, especially those parents who parent children with a little extraness.
“After the ultrasound that was the first time I allowed myself to really have a feeling on it other than, ‘It is what it is.’ We all want to give our children the best fighting chance.
“Most times that best fighting chance is different [than] what we think it should be.
“Evie’s life will look different than I thought and that’s OK. She was #bornjustright to live the life that gives her the best fighting chance.”
What inspiring words, right?
We could all learn a thing or two dozen by how Maddie has handled this news about her daughter.
We may think her dad sucks, but we continue to wish her the best.