AMC Awareness Month

June is AMC awareness month. On June 30, people all over the world who have been affected by AMC will wear blue to increase awareness of this rare condition. If you know Helena, I encourage you to wear blue for AMC!

Helena’s condition, Arthrogryposis Multiplex Congenita is a rare condition that causes three or more joint contractures in two parts of the body. We first discovered that there was something going on with her joints during my pregnancy at our routine mid-pregnancy ultrasound. Many babies are not detected before they are born – and many mothers are asked to terminate their pregnancies when this information is discovered. We are thankful to have had doctors who were not of this mindset! Learn more about this experience in this post: Perfection Redefined

Typically, it is said that AMC affects every 1 in 3,000 births. With some variants of the condition, it may even be closer to 1 in 10,000. AMC is not considered to be a disease or syndrome, but rather a condition caused by another health problem or environmental factor.

There are many reasons AMC might occur. There may not be enough room in the mothers womb, and limited movement may be the cause. There is research to suggest that certain nerve activities that occur in fetal development may have been delayed, causing contractures. The condition can be caused by a maternal illness or genetic factors. For this reason, AMC is different in every child who has it. No two kids are the same.

We found out in December of 2019 that Helena’s AMC was likely the result of a genetic condition. We are still learning what this means for Helena’s plan of care.