I came across that today when looking for other information dealing with Down Syndrome. I don't know if they have anything to do with it or with anything else.
My son Drew has Femur Fibula Ulna Syndrome, and three of his limb are affected. Some of his bones are missing, and some are abnormally-formed, which means that both his arms are short (about half to three-quarters as long as they should be) and his right leg is about half as long as his left. Drew is awesome little guy, and I wouldn't change him for the world!
I am in the middle of cooking supper, so I don't have time to write too much right now, but I will try to get back her later tonight. Otherwise, feel free to PM me: we also found out about his limb diferences when I was pregnant, so I can relate to how you feel. You might want to check out the forums on www.limbdifferences .org. The people there are very nice and helpful.
we have one short limb (left arm, basically ends just past his elbow, no fingers or hand) but they don't believe it's connected to anything else - they have checked his heart and kidneys as extensively as you can on an ultrasound. they think because it's isolated it was a random blood clot. like you, we won't know more until he is born; he will have bloodwork done to rule out any clotting disorders.
what kind of testing will they be doing after birth?
We have a "team" that is ready at Children's should he come out as the u/s says (with short limbs) but I have no idea what they will test for??
We have ruled out Down Syndrome-had a CVS so all was well there--
I also appreciate the limb link from the other poster--after dinner I would like to know if they found out your limb differences during a u/s or was it not until afterwards?
We found out about Drew's limb differences during my 24 week anatomy scan, and we subsequently went for so many more ultrasounds that we had a very clear idea of what he would look like when he was born! Drew is missing both of his radius bones, and that led our doctor's to suspect that he might have TAR Syndrome, which is characterized by extremely low platelets in the blood which could lead to him hemmorhaging if he got bumped. Thankfully, once he was born doctors were able to rule out TAR Syndrome, and genetic councelling led us to the FFU Syndrome diagnosis, which is totally random and only affects the limbs.
Sometimes limb differences are caused by genetic syndromes that affect other body systems, and that is likely why there will be a team present at you little guy's birth. However, at the same time they are also often completely random events. I know it's hard, but try to get to stressed out about a diagnosis right now. Enjoy the rest of your pregnancy, because time goes by so very, very fast! (Drew turns one tomorrow, and so I am feeling particularly nostalgic tonight )
I don't have advice, but just wanted to introduce myself to this group, too. I'm 22 weeks pregnant and our baby boy has a short radius in his left arm. The ulna & hand aren't developing right either. We've done an amnio already and ruled out everything they tested for. We too have been told we won't know what's really wrong until he's born. We go to a perinatologist every month and will track growth with ultrasounds. Just wanted to say I know what it's like to not have answers and have to wait until your little one is here to start to get them!
we have one short limb (left arm, basically ends just past his elbow, no fingers or hand) but they don't believe it's connected to anything else - they have checked his heart and kidneys as extensively as you can on an ultrasound. they think because it's isolated it was a random blood clot. like you, we won't know more until he is born; he will have bloodwork done to rule out any clotting disorders.
what kind of testing will they be doing after birth?
I RARELY post on this board but for some reason tonight decided to bump on over. Our DD is 8 months old and is missing her left hand and fingers. She pretty much has 1/8 or so of her left "palm" and a "nubbin" where her thumb would have been. I HATE the word nubbin! We found out on our 20 week ultrasound. They sent us to an ortho dr while I was pregnant (total waste of time), and a perinatologist to check her heart, kidneys and brain- all of which were fine on ultrasound.
After she was born they didn't do any testing. When she was 6 months old we went to the ortho dr again to have her left arm xrayed. They said she has her full bones in her forearm but they can't tell if she has bones in the palm area. The Xray was torture and we won't be doing that again!
She is 8 months old and perfect in our eyes. It was heartbreaking when they told us but once she was born, everything seemed fine. We expected it and dealt with it while we were pregnant so that's why I think we took it so well once we saw her. She pushes up and rolls over and is right on track developmentally. She uses what she has to hold toys and uses both hands to keep things close to her face for chewing (she's teething).
I'd be happy to talk with you if you have any questions or there's anythign I can do to help! I remember how distraught I was when I found out and how nice it was when I found other moms with children with the same thing as our Bella.
Sorry if this is late- I don't get on too often and I don't check this board that often. But My DD was born missing her left hand and half her forearm. We found out after 20 weeks, so we were prepared. We had more ultrasounds to make sure her heart and kidneys were okay- they go in conjuction with limb differences. She is perfect. Honestly for us- or atleast me it was harding waiting to see her, since you just don't know what she looks like. I was checked for everything- just a random thing.
She is an awesome kid, same as bella- healthy, she rolls, uses both arms to do things, she can pull herself up after she rolls and is starting to pull up on me. She does get her prostheic arm next week, which we are anxious to see what happens- if she wants it or rejects it.
I actually found some great support from this board and have kept in contact with them. Please let me know if you have any questions. Hope this helps.
Re: Anyone with short limbs found in the womb?
I think that those are looked at when looking for Down Syndrome markers.
https://findarticles.com/p/articles/mi_m0CYD/is_22_37/ai_94817271/
I came across that today when looking for other information dealing with Down Syndrome. I don't know if they have anything to do with it or with anything else.
Good Luck.
Hello!
My son Drew has Femur Fibula Ulna Syndrome, and three of his limb are affected. Some of his bones are missing, and some are abnormally-formed, which means that both his arms are short (about half to three-quarters as long as they should be) and his right leg is about half as long as his left. Drew is awesome little guy, and I wouldn't change him for the world!
I am in the middle of cooking supper, so I don't have time to write too much right now, but I will try to get back her later tonight. Otherwise, feel free to PM me: we also found out about his limb diferences when I was pregnant, so I can relate to how you feel. You might want to check out the forums on www.limbdifferences .org. The people there are very nice and helpful.
Created by MyFitnessPal - Free Calorie Counter
we have one short limb (left arm, basically ends just past his elbow, no fingers or hand) but they don't believe it's connected to anything else - they have checked his heart and kidneys as extensively as you can on an ultrasound. they think because it's isolated it was a random blood clot. like you, we won't know more until he is born; he will have bloodwork done to rule out any clotting disorders.
what kind of testing will they be doing after birth?
We have a "team" that is ready at Children's should he come out as the u/s says (with short limbs) but I have no idea what they will test for??
We have ruled out Down Syndrome-had a CVS so all was well there--
I also appreciate the limb link from the other poster--after dinner
I would like to know if they found out your limb differences during a u/s or was it not until afterwards?
We found out about Drew's limb differences during my 24 week anatomy scan, and we subsequently went for so many more ultrasounds that we had a very clear idea of what he would look like when he was born! Drew is missing both of his radius bones, and that led our doctor's to suspect that he might have TAR Syndrome, which is characterized by extremely low platelets in the blood which could lead to him hemmorhaging if he got bumped. Thankfully, once he was born doctors were able to rule out TAR Syndrome, and genetic councelling led us to the FFU Syndrome diagnosis, which is totally random and only affects the limbs.
Sometimes limb differences are caused by genetic syndromes that affect other body systems, and that is likely why there will be a team present at you little guy's birth. However, at the same time they are also often completely random events. I know it's hard, but try to get to stressed out about a diagnosis right now. Enjoy the rest of your pregnancy, because time goes by so very, very fast! (Drew turns one tomorrow, and so I am feeling particularly nostalgic tonight
)
Created by MyFitnessPal - Free Calorie Counter
I RARELY post on this board but for some reason tonight decided to bump on over. Our DD is 8 months old and is missing her left hand and fingers. She pretty much has 1/8 or so of her left "palm" and a "nubbin" where her thumb would have been. I HATE the word nubbin! We found out on our 20 week ultrasound. They sent us to an ortho dr while I was pregnant (total waste of time), and a perinatologist to check her heart, kidneys and brain- all of which were fine on ultrasound.
After she was born they didn't do any testing. When she was 6 months old we went to the ortho dr again to have her left arm xrayed. They said she has her full bones in her forearm but they can't tell if she has bones in the palm area. The Xray was torture and we won't be doing that again!
She is 8 months old and perfect in our eyes. It was heartbreaking when they told us but once she was born, everything seemed fine. We expected it and dealt with it while we were pregnant so that's why I think we took it so well once we saw her. She pushes up and rolls over and is right on track developmentally. She uses what she has to hold toys and uses both hands to keep things close to her face for chewing (she's teething).
I'd be happy to talk with you if you have any questions or there's anythign I can do to help! I remember how distraught I was when I found out and how nice it was when I found other moms with children with the same thing as our Bella.
I don't do PM so you can email me if you'd like. [email protected]
Sorry if this is late- I don't get on too often and I don't check this board that often. But My DD was born missing her left hand and half her forearm. We found out after 20 weeks, so we were prepared. We had more ultrasounds to make sure her heart and kidneys were okay- they go in conjuction with limb differences. She is perfect. Honestly for us- or atleast me it was harding waiting to see her, since you just don't know what she looks like. I was checked for everything- just a random thing.
She is an awesome kid, same as bella- healthy, she rolls, uses both arms to do things, she can pull herself up after she rolls and is starting to pull up on me. She does get her prostheic arm next week, which we are anxious to see what happens- if she wants it or rejects it.
I actually found some great support from this board and have kept in contact with them. Please let me know if you have any questions. Hope this helps.