We are Ian and Sara Lemin. Ian is a critical care RN and Sara is an OB/GYN. We are also arthrogryposis parents.
In 2015, we were married and blended our family of four teenagers. Then in 2017, we learned we were expecting our fifth little blessing, Caelan. The first half of the pregnancy was smooth and uncomplicated. An an OB/GYN and a nurse, we had easy access to ultrasound machines, and would sneak peeks of Caelan on lunch hours and weekends and watch him move and wiggle. Even to our trained eyes, he seemed to be growing and moving normally.
At our 20 week ultrasound, Caelan was diagnosed with bilateral club foot deformities. Two weeks later, in consultation with our Maternal Fetal Medicine specialist, it was discovered that although Caelan moved his head and trunk, his arms and legs were fixed in flexed positions. The word "arthrogryposis" was mentioned, but neither of us remembered from our training exactly what that was. In the coming months we would come to learn much more about AMC, but we were also disappointed with the lack of literature available to us and our care team about what we could/should be doing during the remainder of the pregnancy. Since each child with AMC is so unique, there were no guidelines to help us figure out the safest way to prepare for Caelan's delivery and early life.
In November 2017, our little warrior made a surprise entrance into the world at 27 weeks, weighing just one pound thirteen ounces! He spent the 78 days of his NICU stay amazing us with his strength and perseverance. We gave him the nickname "Sweet Feet", and his curved little legs and feet and folded up arms and hands were just perfect to us. As he grows, he learns a new way to adapt to his challenges, and teaches us patience.
We started Take TIME for AMC, Inc in honor of Caelan and other AMC children and their families. We have met many families who did not learn of their child's AMC before birth.. We feel called to use our unique position at the intersection of obstetrics and AMC parenting to raise awareness of the prenatal aspects of the AMC journey.
When we first learned of Caelan's diagnosis of AMC, one of the most helpful resources was Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI). Founded and run by other AMC parents, they help connect families around the world and provide helpful information and resources to families.
Visit their website by clicking the link below.