Congratulations on the birth of your beautiful child! It may seem surprising to hear those words, when the majority of words or phrases you hear are filled with medical jargon and whispers of worry and concern. My name is MaryBeth Eberhard and I am the mother of one child with arthrogryposis. I clearly remember the sounds of the NICU, the meetings with doctors, and the new vocabulary. It was so unfamiliar and frightening then, and now it is all second nature. I am writing to tell you it will all be OK. You will be OK, and so will your child. These next few months will be some of the most difficult of your journey. My advice is to seek support from those who have journeyed this path before you. You will find some of these strong families online at www.amcsupport.org.
Many parents are given a very grim outlook the first time they meet with their medical team, usually while standing among the beeping and humming of the hospital NICU. I was in your shoes just four short years ago. I remember the chief of staff of orthopedics sending my husband to my hospital room with an index card that had 3 words scribbled in black: arthrogryposis multiplex congenita. From that moment, our quest for information began. We soon learned that arthrogryposis is a congenital birth defect recognized by multiple joint contractures and muscle atrophy. Soon after being handed that card, we were able to locate a great doctor and avoid unnecessary surgeries. We were also pointed in the direction of a great support group, Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI), on whose Board of Directors I have proudly served.
Arthrogryposis Multiplex Congenita Support, Inc., is a 501(c)3 non -profit organization formed with the goal of raising awareness of arthrogryposis multiplex congenita, and to provide pertinent information regarding this diagnosis to those touched by arthrogryposis, as well as those in the medical community.
AMCSI hosts an annual conference for families. It is a wonderful opportunity for families to sit back, relax, and speak freely about the challenges and joys of living with AMC in addition to learning from experts in the field of arthrogryposis. In addition to the conferences, AMCSI is proud to be co-sponsoring an upcoming documentary in which many of our families share their stories. We provide an online support community with discussion boards that cover all topics including but not limited to therapy and surgeries, home modifications, and receiving the diagnosis of AMC in utero. Our members are all-supportive and depend heavily on one another. This freely flowing source of information has been a great blessing to my family. It has changed my feelings from anxiety to hope, and it has helped me form a network of support and a plan of care for my children. I invite you to visit our site www.amcsupport.org. There you can share your story, ask questions and read the stories of those affected by arthrogryposis.
This beginning time is fleeting, but will always stay with you. Remember to hold, smile, and breathe in the beautiful scent of your baby. We are here to help you along your new journey.
NICU Packet Coordinator
Also read some frequently asked questions about AMC.