Maddie Brown Brush is famous for being on TLC’s Sister Wives, and she welcomed her daughter, Evangalynn Kodi, into the world with her husband on August 20. Brown Brush described the experience as hectic, as specialists swarmed her hospital room right after she gave birth. They did so because Evangalynn was born with FATCO Syndrome, a rare, genetic, congenital limb malformation syndrome. Since her daughter’s birth Brown Brush has spoken about the syndrome, as she wants her daughter to accept who she is as she grows. She has also mentioned the fears she has for her daughter, as the impacts of this disorder are hard to discern for adults. It is so rare that the long-term results cannot be known.
About FATCO Syndrome
Fibular Aplasia, tibial campomelia, oligosyndactyly (FATCO) Syndrome is a rare, genetic, congenital disorder that results in the malformation of limbs. This syndrome is characterized by unilateral or bilateral aplasia or hypoplasia, tibial campomelia, and lower limb oligosyndactyly. Aplasia and hypoplasia mean that a bone is either partially or completely absent from the body. For this syndrome, the fibula is the most commonly affected bone. Campomelia is a form of dysplasia that affects bent limbs, and in this case the tibia. Oligosyndactyly of this syndrome commonly affects the lower limbs, but the disorder has the potential to affect the upper limbs as well. The causes of this disorder are unknown, and cases are isolated, sporadic, and unilateral. There is a proposed theory that the disruption of limb development occurs during embryogenesis, and another that suggests inheritance through the X chromosome. FATCO Syndrome affects how bones are formed in utero, and can result in different symptoms for different people. The Human Phenotype Ontology (HPO), which collects data on symptoms described in medical resources, states that 80%-99% of people with FATCO experience abnormalities in the fibula and tibia and an absent hand. 30%-79% experience problems with their cardiovascular systems, finger syndactyly, which is the connection of two or more fingers, premature birth, impairments in their respiratory systems, short stature, claw hand, which is defined by an extreme curve of the fingers, and fused ankle bones. People with FATCO Syndrome do not have any issues with their mental development.
Evangalynn’s Story
Before Evangalynn was even born, an ultrasound revealed that their was an abnormality with the formation of her body. At the routine ultrasound at 28 weeks of pregnancy, the doctor told Maddie Brown Brush that he could not find all ten of her daughter’s fingers. At that time, she was diagnosed with oligodactyly. It was not until Evangalynn was born that her parents realized that their were more abnormalities. She was missing one thumb and one toe, and one of her legs was missing the fibula and had a bowed tibia. On her other hand, two fingers were fused together as well. It was after birth that she was diagnosed with FATCO Syndrome. Because this syndrome is so rare, it is hard to know how the disorder will affect her as she grows, which is one of the facts that Brown Brush struggles with. The family has to wait until she is one to consider treatment options, as her body will not be developed enough before then. Even while the unknowns are frightening, Brown Brush wants to openly speak about FATCO Syndrome and spread awareness and positivity.
More About FATCO Syndrome
In terms of treatment, the main goals are to preserve the foot and to make the affected limbs equal in length to their counterparts. Surgeries are options, but treatment varies from patient to patient. Elongation surgery, which takes the affected limb and makes it longer in order to match it to the other limb is one of the main options, as it will make movement easier.
Find the original article here.
_______________________________________________________________________________________________________________
