What is Arthrogryposis?

Understanding Arthrogryposis Multiplex Congenita from margaret chaidez on Vimeo.

Arthrogryposis comes from the Greek and literally means “crooked joints.” (Arthro = joints, gry = crooked, posis = a condition.) Multiplex means in multiple parts of the body. Congenita means “from birth.”┬áSo AMC literally means a crooked joint condition in multiple parts of the body that you get from birth. You need at least┬áthree contractures in at least two parts of the body to gave arthrogryposis multiplex congenita.

The above video will help you understand about arthrogryposis. If you have just had a child diagnosed with this, or if you are simply curious, watch the video! It was filmed by Margaret Chaidez, another mom who has a child with arthrogryposis. We travel 3,000 miles to have our daughter treated by Dr. van Bosse, the man in the film, and now you have an idea why. :)

And by the way, welcome to the our site! This site was created to keep friends and family updated about our Laelia, although it’s turned into more than that.

Laelia Sky was born at 1:27pm on October 3rd, 2007. She weighed 7lbs and 2 ounces. She was diagnosed with amyoplasia, a type of arthrogryposis multiplex congenita (or AMC), the morning of October 4th. That means the anterior horn cells that would make up all major muscle in her body somehow stopped forming early on in the womb. Also all the joints in all four of her limbs have contratures causing her to not be able to bend her fingers, elbows, knees, etc. As of today they have no idea what causes that, nor are they close to finding out. Some guess it’s lack of amniotic fluid, a vascular accident or even just a miscommunication between the parts of the body when they are forming. The head geneticist on the case is Dr. Judith Hall who we’ve also traveled to see. She confirmed our diagnosis of amyoplasia and assured us in her gentle way that we did nothing to cause this.

Arthrogryposis simply means having joint contratures. Amyoplasia literally means a=no, myo=muscle, plasia=growth. This condition only effects my daughter’s physical body. She is a super smart, articulate little girl who I am happy to call my own. I hope you enjoy her adventures as she discovers her world in a way that’s a little different than the typical child. And I hope everyone reading this becomes a little more aware of arthrogryposis which effects 1 in 3,000 births. Or really I’d just be happy if my blog’s own spell check knew it was a word. :) Ah, one step at a time.

UPDATE: We have Roland now too! He was adopted from Ukraine on August 15th, 2012. He has the distal type 2E form of arthrogryposis (also diagnosed in person by Dr. Judith Hall). It’s very similar to amyoplasia in that it’s not genetic and the cause is unknown, but it gives him his big eyes and nose, small jaw and leaves him with a bit more muscle. Distal means furthest from the body and most distal types are genetic and only affect the hands and feet. Distal type 1 affects only the hands and feet. Distal type 2 affects hands and feet and “something else” (in Roland’s case he has severe elbow and knee flexion contractures). And the type 2E accounts for Roland’s facial features and means his condition is not genetic in origin.