About Us
My name is Peg Chaidez and I have a 5 year old son with arthrogryposis multiplex congenita. I found out when I was 20 weeks pregnant and the initial reaction from the doctor was to “consider our options.” He thought it was trisomy 13 or trisomy 18. I went for a 2nd opinion and was told it was arthrogryposis. I had to have the doctor write it down. Arthro-whatsis? He had to be wrong. So I went for a 3rd and final opinion with Dr. Marion Verp, a geneticist at University of Chicago. She did confirm Owen had AMC in all four limbs. I spent the next 20 weeks creating the best plan of care. I interviewed doctors, therapists, massage therapists. You name it, I found them. When I had my c-section on April 10, 2006 I have never been so afraid, so excited. I remember holding my breath waiting for Owen to cry. In that moment, I knew we would be okay. Owen was born essentially pretzeled. His arms were locked at his sides with fingertips touching forearms and his right leg was twisted over his left shoulder and his left leg was behind his back. He has had 6 surgeries to date, physical therapy, occupational therapy, acupressure, energy healing, cranio sacral massage, music therapy, aqua therapy and horse back. He is starting to take steps with assistance, he feeds himself and he is the brightest happiest little boy.
I started this project back in July 2008 and have spent the past 3 years interviewing families, working on the story and raising money for the documentary. I will finish filming in a few weeks and the plan is to release the documentary in early August or November.
I am a mother of 3 boys who had a lucky life changing moment with the birth of my third son. I believe everything happens for a reason. I believe anything is possible as long as you believe it is possible.
{ 21 comments… read them below or add one }
interested in seeing what you have found out about arthrogryposis. i have a 6 year old with it.
Rebekah, thanks for commenting. Is there anything specific you would like to learn or see if I have found other AMCers with similar presentation? Owen is affected in all four limbs and most of the time I forget he has a diffability. Until someone stares or asks a stupid question.
I have a lot of information and I am slowly figuring out the best way to share all the stories and learnings. Feel free to email if you have specific questions.
Peg
Hi,
I found your website when I was trolling the internet looking to see if any new information may be out there on AMC. I find sites like yours fascinating. Of course the birth of the internet has been the best thing in finding people like myself. Here is a little history about me. I was born in 1970 to a Mother who had Arthrogryposis(Mayo Clinic diagnosed her in 1939or 1940, I actually took my first big trip as a young baby to Mayo). She was the oldest of five, her youngest brother was also born with Arthrogryposis. He’s married, but without children. I have an older sister by three years who is “normal”. I always say that is a very debateable subject-lol. I myself have two boys, both have arthrogyrposis. Our Arthrogryposis as you see is genetic, but we don’t have the “typical” AMC. We have all of the upper without any of the lower. So my shoulders are rotated forward, wrists and elbows bent, fingers look as if I suffer from RA. Our ribcages are set up higher than normal, tendons short and tight, cant support my own body weight—-okay couldnt do this even when I weighed 120lbs in my teens/20′s.-lol
The only people I had ever known to have this condition were my family members. When my oldest was born in 1994, we drove from NY to Mass. to have our son, Rick, treated at Shriners. I met my first person with Amc. She had the “typical” Amc throughout her body. Not only had I met my first person with AMC, hers also was genetic. Her father had it, she had it and her first born was born with it. Meeting this woman made me for realize just how lucky I was, for she had over 20 surgeries growing up for her club feet, but also had severe scoliosis and had many spinal surgeries. Her attitude towards life, caring for her son, and just listening to her tell about her struggles she went through herself were a gift to me. Over the next three years, while we lived in New York, I was able to talk to her quite a few more times, we were sometimes lucky enough to have the same day appts at shriners and would ride with the Shriners to Mass and talk the whole way.
I guess what I wanted to say to you is, I think you have done a wonderful thing. Every child needs to know they arent alone out there. Every parent needs to have support and know someone else is also walking in their shoes. I can remember in the 90′s when I was pregnant and being military(husband) having the doctors look through their medical books because they had never heard of AMC, let alone seen it, but they were confident that their ortho department would have no problems helping our child. Yeah, I didnt hold my breath-lol.
You have a wonderful attitude, and trust me that attitude is definitely picked up by your son. It is a fine line we walk as parents in trying to know how hard we push our kids, when to be hands off, when to be their cheerleader or when to give them a kick in the butt, and thats with any child. When you add in the AMC factor, it gets even more tricky.
Coming from a mother who truly felt that AMC defined everything about you, I can tell you it taught me to teach my kids that AMC is just a small factor of who you are, it may mold your thoughts and views on somethings and it definitely will always be a part of you, but it never will define you as a person. I always have encouraged my boys to reach out and grab what they could in life—it was the only one they were going to have. Luckily the Shriners Docs always felt the same way, they told me if the boys want to try it, let them. Both boys played baseball, my oldest played ice hockey for five years and my youngest still plays soccer. He will have to have hand surgery this winter due to breaking his pinkie, Doc thinks it might come out straighter than it originally was-lol. There are certain things I had to deny my youngest, like football and wrestling. There are just somethings that are physically impossible—even if he cant see that-lol.
I didnt mean to write so much-lol- so I will sign off now, but truly, thank you for what you are doing.
Enjoy your boys and God Bless,
Robin Lord
Robin,
I would love to talk more to you. I have so many questions for you. Amazing how connected we all are now. I can’t imagine having Owen and trying to do the right thing without my online support network. I would have been lost without my AMC family.
I will email you with some questions later this week. Thanks so much for sharing your story.
Peg
Hi, how do you play the video? I have subscribed but just cannot figure out how to view the footage. Lisa
Lisa, you should see a little arrow on the screen. Just hit that and the video will play. Are you looking direct off YouTube or off this site? Let me know and I am happy to help. Sorry for the delayed response.
Peg
Hi Peg, lisa again. I have been trying directly off the website. I can try you tube as well. I am so excited to see your documentary. Lisa
I found your website through a note on Babycenter.com. I’m 34 weeks, and was just told my son has AMC. Not knowing what it was, I’ve been looking everywhere for information. It’s scary. Not nearly as scary as when they tested for Trisomy 18, but it’s still intimidating to me. I’m really happy to see websites about AMC, and your documentary preview, well honestly made me cry.
Danielle
Hello, my name is Holly and I am 30 weeks pregnant and the dr. suspects distal arthrogryposis with my baby. She has all of her fingers formed and can open her hands, but normally doesn’t and likes to keep them closed. Both of her feet are clubbed. Can you please share with me what led them to believe your son has AMC and how you are doing now? I notice you posted this awhile ago… any info would be appreciated. Thank you so much.
yes the video was great made me cry, she was right. my daughter isnt broken. to me she is perfect. love your website. thank you
When will this be available for purchase?
Tanya,
It is my goal to have this completed by early Fall at the latest. I am hoping to have a rough cut available to share with attendees at our annual AMC convention in July. As soon as I have any news or details, I will be sharing via the website. I will make sure I keep you posted.
Peg
I am an occupational therapy student and I chose to write a report about AMC not knowing anything about it. I am so moved by your website and the trailer for your documentary. I want to thank you for helping me start the process of learning how I can best serve these very special children and families when I graduate. I wish you and your family all the best of luck and happiness and can’t wait to share your finished product with my classmates and faculty.
Kati Soleil OTS
East Carolina University 2012
Kati,
Thanks for your comment. I am happy to help put you in touch with other AMC families or answer any questions you may have regarding treatment. If I can ever be of help, please feel free to reach out. Good luck with your degree and thanks for your dedication to our kiddos.
Peg
Did you feel your baby move a lot in utero? Or did movements decrease? If so, what week?
I find this interesting since I have arthrogryposis. Where can I see this documentary? It’s just that I’ve never known anyone like me so I think it’s interesting to see other people going through the same things I’m going through.
Thanks!
Hello Peg.
My name is Steve, and I was born in 1954 into a family with no history of arthrogyposis .. and with an identical twin brother, who does not have arthrogryposis. They didn’t know much about it then, so my care was probably very different from what your son Owen is getting. I am affected in all my extremities, but much more in my lower extremities than my upper.
I wanted to leave you a message of hope for your son (even though i know from the trailer for your documentary that you pretty much know this already).
With some perspective of the years I can tell you that, although there have been many events in my life i hope i don’t have to repeat, and even though i have limitations i wish i didn’t have, my life is not defined by my physical disabilities, it is much more about the same issues that any able body person deals with, how to be a good husband, an effective father, how to use my time and my resources in a way which best serves those I love and care for.
I am not defined by my arthrogyposis. I am defined by who i am, arthrogyposis only defines what i have to work with.. not the work i do with what i have.
I wish the same for your son, and it sounds like he has a good start with you as his Mom.
This was a gift given me my how my parents raised me, (they enabled me to grow up more aware of what i can do, than what i can’t). And it has been extended through my supportive and loving and amazing wife today. I am truly blessed with a career, a home, a family, an amazing wife, 4 wonderful children, and a future which only God knows, but which i am confident in.
Tell Owen not to listen to those who list what he can’t do.. and work together with him to find out what he can do. With creative modification i can ride a bicycle (although now i find i enjoy a hand cycle more).. I can ski (on a mono sit ski, not well.. but i could if i worked at it), i am a pilot, drive a standard transmission car, I am working with computers as my profession, and (like most people) what i regret most in life are the poor choices i have made in my life, not any disability I have been afflicted with, and what i like most in life, are the results of any good choices i have made, and the blessings of a loving God.
All my blessings and encouragement to you and your son Owen. I am sure he will have a wonderful life!
Steve P
My grandson to be (at 28 weeks) was just diagnosed with AMC. I was devastated by all the information on the web… Then I happened onto your site. Thank you for giving us all hope! There are so many variables to his possible condition- and I thought it was the end of the world. (only until I came onto your site) I now feel ignorant to my situation- and pray that my grandson’s condition teaches soft hearts to those around him.
Regards,
Myra in MD
Myra,
Congratulations and so happy you found me and our family. For every depressing piece of information, I can share 20 other positive stories. A few resources that can help you and your family. Please join the AMC Support Forum at http://www.amcsupport.org. There are so many resources available and families that know just what you are going through now, even as a grandparent. Second, please watch this interview with Dr. Harold van Bosse at Shriners Philadelphia. You can see the full version here (36 min): http://www.vimeo.com/24626314 and also see 3 shorter clips of the full interview here: http://www.youtube.com/amcdocumentary. There are some great tips that your daughter/daughter in law should be aware of like drinking more caffeine to get the baby moving. I will email you separately too, I have some local contacts that can also help your family.
Peg
My names Katherine. I’m 21 and have Arthrogryposis in all 4 limbs. It’s seems most people on here have very young kids with Arthrogryposis. Anyways. I’m open to any questions. Just email me at k _ q u i n n 9 0 @ y a h o o . c o m
Hi
My name is Siphiwe from South Africa , i have 3 years old baby boy .He has AMC.Weonly know about his condition at birth.1st operation on his elbows was done when he was 4 months old.Next year in Feb 2012 he going for the clubfeet operation .