Lethal Anomalies

By Marie In June of 2014, my husband and I found that our baby had a condition that was incompatible with life: arthrogryposis multiples congenita. This website helped me feel less alone during the weeks that followed. I’m sharing our story in hopes that it may help someone else experiencing a similar situation. That horrible Wednesday had started out great. My two year old daughter had an allergy appointment and, unlike her older brother, her tests came back with no allergies. No more Epipens! I dropped the kids off at my mom’s before heading off to the clinic for my 12-week ultrasound appointment. Although our OBGYN had picked up a […]

What is Arthrogryposis?

Arthrogryposis multiplex congenita (AMC), or arthrogryposis, involves congenital joint curvature in two or more areas of the body. The name translated from is Greek is literally “Hooking Joints.” It causes abnormal fibrosis of the muscle tissue, resulting in shortened muscles and preventing extending or flexing of the affected joints. There are three types of Arthogryposis: amyoplasia, distal arthrogryposis, and syndromic. Amyoplasia features severe joint contractures and muscle weakness. Distal arthrogryposis mainly involves the hands and feet. Syndromic is a primary neurological or muscle disease. It may also be called Autosomal Recessive Amyoplasia. For further information, visit: AANEM.org – Arthrogryposis Multiplex Congenita NORD (National Organization of […]

We Did Right by Her

by Breann At our first-trimester ultrasound we were told our daughter would likely miscarry within a month. She had hydrops, open bowels, and heart abnormalities. We were shocked and wanted answers, although none ever really came. After tests came back all negative for common genetic disorders and infections, our providers recommended a pediatric heart surgeon for surgery immediately following her birth. I came in for an amniocentesis the first day that I could, at 16 weeks. They said the ultrasound no longer looked abnormal and this testing was unnecessary. We were again shocked, but ecstatic–feeling as though our prayers had truly been answered. We were […]