Upper Limb Abnormalities

Therece - posted on 06/21/2011 ( 7 moms have responded )

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Hello :)
My daughter Avery was born with bilateral upper limb abnormalities. Both of her arms are abnormal. Her right humerus & ulna are about half "normal" size with absent thumb, and her left humerus is 3/4 "normal" size with absent ulna, thumb & index finger. Avery is also deaf in one ear. She is 1yr old now, and frustratingly enough still we have no answers as to what her condition is or what caused it!
I have been searching high and low since she was born for a support group or mom-meetup group with children similar to my Avery. but NO SUCCESS :(

I am located in North York, ONT

Is there ANYONE out there???

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Jane - posted on 06/21/2011

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I know several people with at least one arm that developed abnormally. Interestingly enough, a lot of the babies born along the Texas-Mexico border (near where I live) have developmental abnormalities often including shortened arms or fused or undeveloped fingers. However, I have adult girl friends with an undeveloped limb who have gone on to have perfectly normal babies of their own.

Near as I can tell, doctors believe that abnormal limb development (what they call limb reduction) seems to happen when the limb in question isn't fully developed in the fetus before the baby is born. It isn't genetic. They think that is more likely due to the mother's exposure to chemicals, viruses, medications, cigarette smoke or other pollutants but more research is needed. It can also be mechanical in that somehow some tissues from the embryonic sac constrict a limb, or a second fetus crowds the first.

The doctors really don't know what causes it. There is nothing that can be done to prevent it or cure it at this time. However, pregnant moms who limit chemical exposure and who take vitamins before and during pregnancy seem to have a lower risk of having babies with limb reduction.

Cornell University has a web page about it at http://wo-pub2.med.cornell.edu/cgi-bin/W...

and the State of California has a data-gathering program on birth defects that is looking for a cause at http://www.cdph.ca.gov/programs/cbdmp/Pa...

And the CDC page is at http://www.cdc.gov/ncbddd/birthdefects/U... , plus there are other helpful sites at http://www.cdc.gov/ncbddd/birthdefects/l...

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Jen - posted on 08/05/2013

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I just moved from suburb of Chicago to Brockville, ontario. Is that close to you?

Kellie - posted on 09/06/2012

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Hi I know this is over a year old but I hope you see this. My name is Kellie and my daughter Jocelyn was also born with upper limb abnoramalities. On her right arm the bottom half is only half the size it should be, she has no wrist,no hand just one beautiful finger. On her left arm she is missing a finger and 2 being fused at the bottom. She also has one leg 1/2inch shorter and her foot is a half size smaller. We were told it was probably amniotic banding that happened early on in pregnacy. She is now 5 years old and just started kindergarten and doing wonderful! I know it is fustrating and hard but we believe God made her that way for a reason and that we are so lucky to be her parents. Our answer when people ask has always been that's the way God made her and she was just born that way. If they still don't understand we tell them how everyone is different and unique. This has always been what Jocelyn tells people. For the most part we have not had any trouble with kids they are just curious and want to know. She amazes us every day with the way she figures out ways to do things her own way and is very independant. We have never treated her any different than our younger daughter and never let her say she couldn't do anything. As I write this it still gets me emotional because she is so wonderful and I feel so blessed. If you would like to talk just let me know. Oh and I also met a Mom in the same town I live in that has a son 2 years older that has almost the exact same thing as my Jocelyn. Sorry this is so long just wanted you to know your not alone.

Molly - posted on 09/21/2011

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Hi Therece,
My daughter was born with symbrachydactyly affecting the growth of her right hand. Consequently she has a small thumb and no digits on that hand. A little over a year ago I began a non-profit organization that aims to create awareness and celebrate children and individuals born with limb differences called the Lucky Fin Project. You can find us on Facebook (I know there are several families from ONT who are involved) and at the official website www.luckyfinproject.org. You are not alone!

Jenny - posted on 06/24/2011

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Some things are not very common. My name is Jenny and I'm sort of in the same situation as you. My son was born with neuromuscular hamartoma in his cheek. (Basically it is a tumor that is not cancerous.) The thing is, with my little Colson, the doctors have never seen it on the face before. (Rare developmental lesion of mature skeletal muscle and nerve). This, even though a rare tumor, would 'normally' be found on a lung, sciatic nerve, or intestine. Colson's was in his left cheek. They've done two surgeries on him so far. He is now 3 yrs old and a happy little boy, although he still has almost half of his tumor left. I only share this with you because I know how difficult it can be to have doctors not know what the diagnoses is or why it happened. Just do everything in your power to keep your baby happy and healthy other-wise. Sometimes it's a long difficult journey with no one else that knows what you are going through. Even extended family doesn't understand. You feel alone. But you aren't. There are people that go through things that even the doctors don't understand. My husband and I were one of them. One thing to keep in mind is even though it's so hard on you, not knowing answers and worrying about Avery, if those are the things that haven't developed "normally" she will be strong if you are strong for her. She will find a way to do everything else all the "normal" children do. You may even find she can do things better! You'll see. Be strong for your baby girl and have confidence in her. It will take her a LONG way! If you'd like to keep in contact, and have facebook, you can look me up under Jenny Finders White. I hope this helps in some way!

Jane - posted on 06/21/2011

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From what I have seen, it isn't caused by a syndrome. It isn't genetic. It is caused by an accident of environmental fate or by a medication (do you remember the Thalidomide deal in the 1960's?).

All the adults I know who have unusual arms have learned to adapt, and they do just fine. I even went to school with a "Thalidomide baby" who had feet and ankles but no leg bones, and hands and wrists but no arm bones.

You may have to work with Avery to help her come up with a response to people who are afraid or horrified by her difference. But make sure she understands that she is just fine. Everyone has challenges. Some are financial, some are mental, and some are physical. Certainly life is a bit more difficult if you don't have typical arms, hands and fingers, but it beats some other problems such as not being able to see or walk, or in the case of my son, having a mental disorder (he is bipolar, ADHD and ODD, and learns by doing, not by reading or listening).

Therece - posted on 06/21/2011

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Since Avery was born we have seen a team of specialist, including Genetics. So far all the syndroms they has tested for have been negative. We have been prepared to never know what caused her defect. It is I must admit not easy to except not knowing, but I have faith that God made her this way for a reason, and chose us to be her parents.

We accept it for what "it" is.

My mission is to raise Avery to never give up and believe that anything is possible!!!

At this point in our lives I really want Avery to interact with other children that are "different". I think it is important to feel accepted, to be able to relate to a group of individuals. I want that for Avery.

I know that she will be faced with different challenges, and there will come a time that she will feel "different", I just want her to be able to say " I am different, but me and these people are the same"

Not sure if what I am typing makes sense.... but Im pretty new at coming to terms with having a child with a defect.

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