Connections » General Discussion

Ulnar Aplasia - What to expect for our newborn

(13 posts)

Total votes:

  1. kiwimum
    Member

    Hi Chris, Congratulations on your soon to be new arrival. My son who is now 13 months is missing his ulna completly in his left arm and has a thumb and pointer. It never showed up on our scans so it was a wee surprise to us. Max's arm is contracted upwards at the elbow due to some muscle tissue that is attached from half way down his humerus to half way down his radius..sort of like a cobweb. So for us this has really been the only "issue" we have had as until he got a bit more movement in his arm dressing it was a bit tricky. When he was very little his arm looked as if his had was always touching his shoulder - but it is much different now. We have been told that this condition happens in 1 in a million births. So after having lost 6 babies I truely know that there is a reason why Max is here. But you will find your wee babe will do fine. Max was 7 weeks early so that was more of a problem. But he was rolling at 6 months, sitting at about 8 months and has just started "bum shuffling" around the house a few weeks ago. We use a splint at night to help extend the angle around his elbow and to make sure the muscles in the top of the arm don't contract and shorten. As far as using his left arm he can pick up wee raisens with his fingers and has an "amazing" hold on a Chicken McNugget.:) In fact he favours his left arm when eating, passes the food from his right to his left. We also have a five year old and she is just great with Max as he is her brother and that's all that matters to her. When he was born I told her the story that I know lots of parents here probably have about Nemo and his special fin. But she just looked as me and said "Max is a human not a fish mum!!". I didn't see the point into going into "why" as it could confuse her, just that he is missing a bone and that is where the other fingers "grow" from. All the best and feel free to e-mail me if you like. I'm sure you will find this site of GREAT help. Have a great Christmas and New Year Rach
    Posted 4 years ago #

  2. shellbell429
    Member

    hi my name is michelle...i have an almost 3 year old daughter that goes to shriner's in philly...both her arms are affected...if you want to chat...you can email me at stonekids3@dejazzd.com...i look forward to hearing from you...michelle
    Posted 4 years ago #

  3. shellbell429
    Member

    hi my name is michelle...i have an almost 3 year old daughter that goes to shriner's in philly...both her arms are affected...if you want to chat...you can email me at stonekids3@dejazzd.com...i look forward to hearing from you...michelle
    Posted 4 years ago #

  4. melissa
    Member

    Chris, Congratulations on your upcoming baby's birth. I have a son with bilateral ulnar dysplasia. On his right side, the ulna is completely missing and has a fused elbow and two little fingers. On his left side, the ulna gives little visual difference, but he is missing two ulna rays. My son, Aidan, is only six months old, so the overwhelming feeling on his birthday is still very raw, but everyone is right when they say it gets better with time. It gets easier as you see your child's personality develop and see that they use their arms pretty well. I still remember the first time I saw my son bat at a ball with his shorter arm - I was so surprised, but so upset at myself for thinking that there was any doubt. This has really changed my thinking about his potential. So much of what our children will accomplish will be triggered by the attitude and support that we give as parents. You are doing the right thing - learn as much as you can to be your child's best advocate. I can offer you one bit of advice. . . . when your little one arrives, treasure the delivery room experience as if there is not a limb difference. As you know, the experience is very vivid and exciting, so make the best of it and make it about the most important thing - your new child. Your family is in my thoughts and prayers.
    Posted 4 years ago #

  5. Philly
    Member

    THANK YOU TO EVERYONE FOR THE REPLIES AND WORDS OF ENCOURAGEMENT !! Like everyone, we're head long into the holidays and buying gifts for the kids and bay to come - it helps keep the right outlook and the comments here certainly reinforce it. Happy Holidays
    Posted 4 years ago #

  6. Philly
    Member

    Rachel - Thanks for the note. We were told this is a 1 in 1 million event as well - so it's nice to have found someone we a very similar experience. I'd appreciate undestanding the options and expectations for the splinting. When did you start ? How long will it be on ? What were the options/expectations iof you chose not to splint. Your cmments on the muscle tissue are interesting. In ultrasounds, our baby has it's arm up across the chest as well - but the notion that it is held their by the muscular structure has not surfaced and would not be visible in ultrasounds. The current presumption is either 1) this is simply a postion of comfort and there is functionality in the elbow or 2) the cartlidge of teh elbow joint is fused. How early was your muscle situation identified ? Again - thanks for the note and continued feedback. It is great to find a place where others can both inform and empathisize. We are looking forward to February and the next addition to the family. Happy Holidays
    Posted 4 years ago #

  7. Philly
    Member

    Just a quick note to say our son was born on 2/2 - Andrew John. We've been to the Shriner's Hospital in Philadelphia to meet with Dr. Kozin and his team. We have been very impressed with the Shriner's group. We knew Drew would have a missing ulna - and spent a lot of time worrying and contemplating the future before he was born. Now it's simply great to have him home and happy. Andrew has a missing ulna, bowed radius, and missing pinky and ring fingers. The right arm is shortened as well. We are fortunate that despite the missing ulna, he has a lot of functionality in the wrist and elbow. Our doctors have given us some exercises to do with Drew to be sure he retains the flexibility in his wrist, elbow and fingers. The goal is to be sure Andrew doesn't become too left-side dominant. I'd appreciate any ideas others can share about toys and games their young babies enjoyed that helped them exercise their developing arms. I revisited the site today for the first time in several months and saw a lot of postings talking about babies crawling, etc. -- all of which are very encouraging as a parent of a newborns. Thanks in advance
    Posted 4 years ago #

  8. melissa
    Member

    Chris, Congratulations on Andrew's arrival! Aidan is now 81/2 months old and has completely surprised us at his accomplishments this past month. He has started using his underarm to hold objects while playing with them. I honestly believe he favors his shorter arm (with bowed radius, no elbow, missing three fingers, no wrist, and limited movement on the remaining two fingers) as a dominant hand. His left hand is missing two fingers and has webbing that will be separated in a few weeks. He can pick up toys with the shorter hand, just as long as they have rings on them - keys, teethers, etc. He still is not mobile (and I don't expect him to be soon), but he sits up well, flops onto his stomach to grab toys out of reach, and has learned to hold his shorter arm over his head to roll over. Looking back at his first six months, I was terrified to see him push up on his shorter arm. With all of the abnormalities, I was worried about the stability of the arm. I still get a little nervous as the two little fingers bend in unusual positions, but it doesn't seem to bother him. I know now that I "babied" his shorter arm too much, and probably still do, just at a lesser degree. I'm working on it. Again, congratulations and take care. :)
    Posted 4 years ago #

  9. melissa
    Member

    Chris, I also wanted to mention Aidan's favorite toy - Leap Frogs activity ball. Aidan will only spin it with his shorter arm. It sings the ABCs and lights up when he spins it. We also had it when my daughter was little and she loved it just as much. Take care,
    Posted 4 years ago #

  10. jntcas
    Member

    Hi Chris, Congratulations to you and your family on the arrival of Andrew! My name is Nicole and my son Tyler (who is 3) was also born with ulna aplasia. He has no elbow in his left arm and is missing two fingers on that hand. He can't bend that arm-but that does not stop him from doing anything. He truly amazes us. I remember the doctors telling me that he wouldn't be able to crawl "normally"-but our Tyler proved them wrong-not only did he crawl "normally"-but he was just as fast as other babies. He has not been delayed in reaching any of his milestones. He started Early Intervention when he was 2 months old. He also wears a night splint. He receives OT twice a week. He sees Dr. Waters in Boston. Dr. Waters told us that he sees many children with limb difference and that they excel in whatever they do. He told us that Tyler will accomplish whatever he sets out to do and so will your son. Tyler has shown me that Dr. Waters is correct. If there is something he can't do-he will figure out a way to do it. When Tyler was a few months old, I remember the therapist working at having him reach. I would spend time holding toys out for him to reach with his left arm. I can't remember the name exactly, but we got a toy that attached to his infant carrier that had objects hanging down. He really liked that-and I found it was great therapy for him. Enjoy each moment with your little angel-they grow up too quick (and become independent toddlers...he he he) Take care, Nicole
    Posted 4 years ago #

  11. kiwimum
    Member

    Chris I sent you a PM but wanted to agree with Aidans mum too. Max also seems to favour his left hand when it comes to feeding, even holding peas and corn between his fingers. He is always passing things to his left to "check out". I was surprised that he would favour that to his right. Trust me a McDonlads nugget will NEVER fall out of that hand ...tee hee hee Rachel
    Posted 4 years ago #

  12. Philly
    Member

    I have a babay due in Feb 2006 that has been diagnosed with Ulnar Aplasia of the right arm.

    We have seen a doctor at Shriners and will retunr after the baby is born. I'd appreciate any advice htis forum can offer.
    - We have a 5 year old and 3 year old that we haven't told entriely yet. We have explained that everyone is different - blonde hair/brown hair, short/tall, 10 fingers/7 fingers. I'm sure hey'll have lots of questions - as will the neighbors.

    - We've talked to the doctors who tell us this is a rare condition - but aren't they all? Has anyone else had specific experience with ulnar aplasia ?

    - Any early advice that worked well with the baby ?

    Appreciate the feedback and assistance. This seems like a very supportive forum

    Posted 4 years ago #

  13. waynem10
    Member

    We have really been trying to locate someone with a situation similar to our Addi's: We had twins on October 7, 2009. One twin has no deficiencies (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 you since you have experienced something similar to our situation. We would like to hear about surgeries that you have had done and drs. you have seen. Thank you in advance.

    Wayne and Missy Schneider

    Posted 6 months ago #

RSS feed for this topic

Reply

You must log in to post.