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bilateral ulna dysplasia

(8 posts)

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  1. kiwimum
    Member

    Hi Michelle First of all what a gorgeous wee man you have, loved the photo of him. Sorry I didn't see your last post as I would have replied also sorry you have been feeling down. But I'm sure once you see that gorgeous smile and big eyes those feelings fade. My wee boy has ulna dysplasia in his left arm but it is presented in a different way to Andrew. Max's arm is contracted upwards as if his arm is bent up at the elbow with his hand by his shoulder. Max and Andrews are of similar age too, Max will be 8 months in 4 days. Anyway I just wanted to say HI and to say that you will have heaps of friends on this site. I'm probably not too much help for what the future holds regarding movement since the boys are close in age. But if you want to e-mail at anytime feel free. It's really nice to keep in touch with other parents that are going through the same things. Rachel:D
    Posted 5 years ago #

  2. jntcas
    Member

    Hi Michelle! What a cutie Andrew is!! My son Tyler's left arm looks very much like Andrew's arm. He has no elbow in his left arm and it also bows backwards. He is a very active two year old. He has amazed us with all he can do, including feeding himself cheerios with his left hand. He didn't do it right away-if I remember correctly, he was over a year old before he feed himself with that arm. As I said, we are amazed with him. There is nothing he can't do. When we first started taking him to the park, I would cry thinking that he wouldn't be able to climb up on the playground or crawl through that tunnels. But, he does all of that, including climbing up the rock wall. Take care. Nicole
    Posted 5 years ago #

  3. GMD
    Member

    Hi Michelle Your son Andrew is so adorable. My son Dylan was also born with bilateral ulna dificiency. It is a little differrent then your son's . Dylan has both elbows but he is missing his pinky and ring fingers on his right and left hands. His middle finger and pointer finger are fused together on his left hand. I can understand how you feel. It does get easier as they get older and become more independent. Dyaln is now 17 months. He is running all around the house. He amazes my husband and I everyday. You can email me at ggargs@aol.com if you would like to talk more. Hope to hear from you soon, Melissa G
    Posted 5 years ago #

  4. melissa
    Member

    MIchelle, I gave birth to my son Aidan a month ago. He right arm has ulna dysplasia and has only two fingers. He does not have an elbow on this arm and the bowing is pretty extreme. His left hand is also missing two fingers and two of the fingers are webbed. He also has a shortened femur bone, which will require lengthening once he is starting to walk. He has all of this toes, but a couple are webbed on the right side. I am still grieving deeply for my son, but I get a little stronger every day. I want to develop some positive strength to pass on to my son - this has become my new goal in life. I have a lot of unanswered questions as to "Why this happened to him? Is it genetic? Was it my fault? " I am sure you have or are still doing through these same emotions. Looking at your little guy, he is just a doll. You have given me such a boost of confidence in my son and myself. He is definately a cutie! I hope we stay in touch! Melissa, mother of Aidan Plainfield, Illinois
    Posted 5 years ago #

  5. jamr
    Member

    well, congrats on your new one. I'm sure he is just a doll also. I do understand exactly what you are going through. Andrew's differences were not known until birth. I also have a two year old little boy almost spaced just as yours are, so you know having one healthy child and then having one with such special features is a little shocking at birth. Andrew is a complete blessing to us. He is now 6months old and I don't even notice his hands anymore. The difficulty I have is that he has no elbows on either arm and watching him try to pick stuff up. His severe bowing in his left arm doesn't really allow him to even grasp and hold anything between his arms. I thank God every day that my child is healthy and that his only real problems are cosmetic. Because he will find a way to do what he needs to do. He rolls over from back to front, he lays on his tummy and pushes up to his best ability, and hasn't been delayed on any of these things yet. It takes time and its ok to be sad. But try not to place guilt or blame on anyone or yourself. This is the way Aiden was suppose to be and it will be a blessing. You may not see it yet, but there is a reason that God chose you to be a mother to this special little boy. To try to help you with some of your questions....We had every test run and it is not genetic. The md told us it was just a "flaw" in the blueprints. He said it happened about the 8 or 9 wk of pregnancy. There was nothing I did or could have done to cause or prevent it from happening. At first, we were told Andrew had radial dysplasia which has a lot of systemic problems that go along with it, but later we visited Texas Scottish Rite Hospital (similar to Shriners) and were told that it was ulna dysplasia type IV, the most severe, he had not elbows but the good news was that it was just that and nothing else. Andrew is what you see and no underlying problems related to the ulna dysplasia. Please feel free to email or if you want to call, I will give you my number....ANYTIME. It will get easier the older he gets and you see that we as parents are really the ones having the most trouble accepting it because our little angels, know no difference and continue to do just what they are suppose to be doing. Michelle mother of Andrew 6 months Dallas, Texas
    Posted 5 years ago #

  6. melissa
    Member

    MIchelle, Thanks for the quick reply. This past weekend we traveled to our home town for a wake, graduation party and wedding reception (yes, a very busy weekend). I was a little worried about having to explain to everyone about Aidan, and foreseeing myself breaking down as I watched other children playing at the party and dance. It is definately getting easier. I think the more I am out and about with Aidan, the better for the both of us as time goes by. I have to tell you that I had to show my mom and dad your son's picture this weekend. He truly has been such a inspiration for my family. My mom was so amazed how well he used his arms. He definately is a strong little guy. I would love to keep in touch with you down the road. My family used to live in Leonard, Texas during my grade school years, but moved back to Illinois to be close to our family. My brother married his high school sweetheart down there and they now live in southern Illinois and make frequent trips to visit her family throughout the year. Take care, melissacurry@comcast.net
    Posted 5 years ago #

  7. jamr
    Member

    I posted sometime in January looking for parents of children similar to my little angel Andrew....I did have a reply but haven't heard anything else. My son has bilateral unlna dysplasia and no elbows on either arm, the left arm is severly bowed and he has two digits, on the right he has one digit and just a stump where the thumb should have grown. Andrew is a blessing in my life, I see that everyday, but, I can't help but be sad when I see the things he can't do, such as put things in his mouth. He is now 6 months old and should be putting everything in his mouth. He has trouble picking stuff up due to the bow in his arm. Just thought I would see if anyone has known anyone with the same challenges as Andrew....feeling sorta blue lately.

    Michelle , mother of Andrew 6 months

    Posted 5 years ago #

  8. waynem10
    Member

    We had twins on October 7, 2009. One twin has no diffiencies (Alexis) and the second has bilateral ulna dysplasia (Addison). Her arms are not severely bowed, she has no elbows, and has 2 fused fingers on each hand. I would love to talk to any of you who have experienced something similar to our situation. We would like to hear about surgeries and drs. that you have had done. Problems and solutions would also be welcomed. Thank you in advance.

    Wayne and Missy Schneider

    Posted 6 months ago #

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