http://limbdifferences.org/connections/ An online resource for families and friends of children with limb differences. en Wed, 08 Feb 2012 03:01:21 +0000 http://limbdifferences.org/connections/topic.php?id=1568#post-6802 Mon, 06 Feb 2012 22:53:34 +0000 Miss tuffit 6802@http://limbdifferences.org/connections/ <p>I am expecting twins in June this year. A boy and a girl. We found out last thursday that our wee man has an absense of forearms and humeri on both sides. He has two little fingers on one side attached at the shoulder (these I have seen for myself) and on the other 3 or 4 fingers. They look perfect, just very lonely. Our other baby appears to be physically typical.</p> <p>I am completely overwhelmed at present. I don't know what it is I am looking for. Maybe just people who 'get it'. </p> http://limbdifferences.org/connections/topic.php?id=1560#post-6801 Mon, 06 Feb 2012 15:20:31 +0000 Miggy 6801@http://limbdifferences.org/connections/ <p>Jsauvie, </p> <p>I too send you my congratulations. All babies are cause for celebration. </p> <p>So my daughter has limb differences on all 4 limbs. She is missing her left arm above the elbow and her right arm is shortened with a "hand" that consists of 3 lingers fused together and no thumb. Basically she has no hands. Both legs are also affected. Although I must say we are very grateful for the little hand she does have...every little bit counts in the world of limb differences. :) My first thoughts are, I can definitely relate to your pregnancy of hearing one hard thing after another. It was a difficult and confusing time, although miraculously filled with peace as well once the dust settled. I'm sorry--it's never easy hearing that your baby isn't "perfect." Although, in my opinion she still is. My second thought, from a logistical standpoint, was "wow! your daughter has elbows and long arms--how wonderful." My daughter's longer arm still isn't quite long enough for an elbow, although her hand has some range of movement and of course her other arm is rather short. So even though she doesn't have hands, having elbows and longer arms sound pretty great from my perspective. </p> <p>I should stop here though and say, every kid with limb differences is different. What they figure out and when depends on them and their own time schedule. Also, It's very hard to know what some of her abilities might be before you get a better look at her. That being said, again...I think having longer arms even without hands, will be a benefit. My brother went to art school with a girl who had no hands. She drew with both arms grasping a pencil together and my brother said she was probably the best technical drawer in their class. She will probably surprise you with all she's able to do. </p> <p>If you want to check out my blog I have written a lot about our daughter (her name on the blog is Lamp) and you can see pictures, etc. Feel free to email me with any questions as well. </p> <p><a href="http://www.wearetheraddest.blogspot.com" rel="nofollow">www.wearetheraddest.blogspot.com</a><br /> thislittlemiggy at gmail dot com.</p> <p>Hugs to you.<br /> Miggy </p> http://limbdifferences.org/connections/topic.php?id=1065#post-6800 Sun, 05 Feb 2012 23:28:54 +0000 jennifershorer 6800@http://limbdifferences.org/connections/ <p>I am 37 years old and lived with this birth affect my whole life. When I was born they just wanted to amatate at my knee. My parents took me to la childrens orthopecdic wow was that a good idea. I have had about 15 surgeries threw out my like my first at 3 mos old and my last about 3 years ago. There is hope I am able to do way more than what doctors planned for. there is hope :) If anything this has made me a way stronger person. I played sports growing up loved soccer. My dad always said you no your own limits and Im glad he did because I lived a normal childhood besides all the surgeries. I have three children now and have had a great life so far. I go hiking 3 days a week. Guess what I have only my big toe on my right foot do to they couldnt ampate do to u need that toe for balance. Sorry my spelling is so bad I missed alot of school growing up. I just wanted to let all you parents no everything will be ok. Just let your child they are loved and god makes everyone diffrent. love to all Jen </p> http://limbdifferences.org/connections/topic.php?id=1065#post-6799 Sun, 05 Feb 2012 23:24:19 +0000 jennifershorer 6799@http://limbdifferences.org/connections/ <p>I am 37 years old and lived with this birth affect my whole life. When I was born they just wanted to amatate at my knee. My parents took me to la childrens orthopecdic wow was that a good idea. I have had about 15 surgeries threw out my like my first at 3 mos old and my last about 3 years ago. There is hope I am able to do way more than what doctors planned for. there is hope :) If anything this has made me a way stronger person. I played sports growing up loved soccer. My dad always said you no your own limits and Im glad he did because I lived a normal childhood besides all the surgeries. I have three children now and have had a great life so far. I go hiking 3 days a week. Guess what I have only my big toe on my right foot do to they couldnt ampate do to u need that toe for balance. Sorry my spelling is so bad I missed alot of school growing up. I just wanted to let all you parents no everything will be ok. Just let your child they are loved and god makes everyone diffrent. love to all Jen </p> http://limbdifferences.org/connections/topic.php?id=1566#post-6798 Thu, 02 Feb 2012 12:01:16 +0000 Katie M 6798@http://limbdifferences.org/connections/ <p>Hi Maria. I was waiting to see if anyone else said anything, but finally decided to go ahead, since your question is something I've thought about a lot.</p> <p>My son was born in 1985, missing his left forearm and hand, before ultrasounds were done routinely. It was also a time of transition (I think). The medical community was beginning to come out with lots of recommendations on pregnancy do's and don'ts that didn't really exist. Mothers of MY mother's generation (I'm 50) smoked and drank during their pregnancies and nobody batted an eye. Things were just beginning to change. We now know that all those things are negatives to the unborn, but people operate on the information they have.</p> <p>I've also considered that during the time that the limbs grow (as you said, maybe like 4 weeks) many, many women don't even KNOW that they're pregnant yet. I think that a lot of things happen during that time that we just can't beat ourselves up over ...</p> <p>If you didn't even KNOW you were pregnant, why wouldn't you have a dental x-ray? Especially 12 years ago? Who knows - today they may be extra pre-cautionary. I don't know. But you operate under the information you have at the time.</p> <p>Anyway, after my son was born, I did feel guilty - he had been in my body, I'd carried him for 9 months. There must have been SOMEthing I'D done wrong, right??? I questioned every doctor I could get my hands on about every move I ever made in my whole life (and I'd been a pretty good girl) ;) But everyone I spoke with assured me over and over that it was nothing I'd "done." His birth was "1 in 10,000" - just one of those things. I decided to believe it. We even talked with a Geneticist and he couldn't come up with any reason this had happened, or any reason that my husband and I were incompatible genetically. We moved on with our lives, ended up having another child, a daughter, who had all her limbs. </p> <p>In closing, I just don't think that it does you or your son any good to carry that guilt around. It doesn't sound like you did anything on purpose or malicious - why would you? You probably acted with the information you had. </p> <p>For all my worry, my son is a handsome, wonderful, kind, and talented young man - perhaps there was much more to all of this than anything I ever did or didn't do - I'll go so far as to say I now think that it was all 'meant to be.'</p> <p>If you ever feel like talking further, contact me via e-mail at <a href="mailto:tmemmel@sbcglobal.net.">tmemmel@sbcglobal.net.</a></p> <p>Best wishes.</p> <p>Katie M </p> http://limbdifferences.org/connections/topic.php?id=1567#post-6797 Mon, 30 Jan 2012 16:27:08 +0000 Mammina 6797@http://limbdifferences.org/connections/ <p>My 1 year old has a shortened right femur and had recently begun walking. I would like for him to wear shoes and wonder if there are recommended service providers who will make him a shoe lift? </p> http://limbdifferences.org/connections/topic.php?id=1566#post-6796 Mon, 30 Jan 2012 08:32:32 +0000 mariav1211 6796@http://limbdifferences.org/connections/ <p>My son Christopher is 11 years old now but I still feel quilty like somehow I must of caused his birth defect. I had a dental x-ray not knowing that I was pregnant but I was in my 1st month when I had the x-ray, I sure thats what caused it. He is missing three fingers on his right hand. The time of the x-ray is when the hands start to form. Also I was on anti-deppresents also prior to finding out I was pregnant now they have new studies that claim they also cause birth defects. I try not to feel quilty because I did not do it on purpose but I just do. </p> http://limbdifferences.org/connections/topic.php?id=1564#post-6795 Sat, 28 Jan 2012 22:38:58 +0000 bannerday 6795@http://limbdifferences.org/connections/ <p>I'm not very far into this journey, but I have a very similar experience going on with my son (11 weeks old). My son has ectrodactyly (split hand) in both his hands, and he is also missing both his tibia bones. It was a lot (a whole big lot) to take in and understand and accept. It's still hard. And I think it's ok that it's hard. No one expects to have a baby with such rare issues. </p> <p>But I can tell you that he's just as wonderful and sweet and smiley and loved as my other two children were, as any baby should be. I don't know much yet about navigating this world with his special needs, but I'm learning as much as I can. It's been tremendously helpful and encouraging to me to read about other similarly affected children and families. </p> <p>We also are involved with Shriners (in Portland, Or) and my son will also have orthopedic surgery so that he can walk with prostheses. (again, that's a lot to take in.)</p> <p>I have blogged my (sometimes raw) feelings and experience surrounding the initial discovery of my son's differences and onward at bannerday.wordpress.com </p> <p>take care. </p> http://limbdifferences.org/connections/topic.php?id=1564#post-6794 Sat, 28 Jan 2012 21:42:52 +0000 Kimberlyjolly 6794@http://limbdifferences.org/connections/ <p>Hello, my name is Kim and my son Landon is 6 months old. He was born missing his tibia in his right leg and with problems in his right hand. His hand condition is considered split hand or lobster claw. We are currently going to Shriners in Lexington Kentucky for these issues. He will have to have his leg amputated at the knee due to the severity of his leg. If you would like to email with any questions my email is <a href="mailto:kimberlyjolly@gmail.com.">kimberlyjolly@gmail.com.</a> I would be more than willing to talk to all of you because when we received the news we had a very hard time and I would like to help in anyway I can. </p> http://limbdifferences.org/connections/topic.php?id=1565#post-6787 Fri, 27 Jan 2012 14:31:52 +0000 Lara 6787@http://limbdifferences.org/connections/ <p>I'm new to this site but I'm glad I found it! My son is almost 2 and was born with posterior medial bowing of the tibia. It has straitened out quite a bit on it's own and now he wears an inch lift on his right shoe. We have it built on the outside of the shoe. Thank goodness we can have it done right in our town (in Minnesota). I've been trying to find an organization to donate his shoes to after he's outgrown them. I've contacted our Children's Hospital and they don't seem to know anything! I feel like there has GOT to be some place they can go so that other kids who have similar issues can use the shoes! I don't want them to go to waste. They are not very worn and could be used by someone who could really benefit from them and maybe can't afford a lift. </p> http://limbdifferences.org/connections/topic.php?id=1564#post-6786 Wed, 25 Jan 2012 23:01:35 +0000 bmorrison 6786@http://limbdifferences.org/connections/ <p>Does anyone out there have a child with this diagnosis. My daughter and son in law are expecting their 4th and were given this diagnosis at 22 weeks. We would appreciate the opportunity to email others with this. Thank you. </p> http://limbdifferences.org/connections/topic.php?id=1291#post-6785 Wed, 25 Jan 2012 22:56:09 +0000 bmorrison 6785@http://limbdifferences.org/connections/ <p>My daughter would be thrilled to get the clothing if it is still available. She is expecting a son with split hand long bone deficiency. Let me know if it is still available and I will send her address.<br /> Thanks you! </p> http://limbdifferences.org/connections/topic.php?id=1105&page=3#post-6784 Wed, 25 Jan 2012 16:18:25 +0000 TiffanyS 6784@http://limbdifferences.org/connections/ <p>vckaushik and Devanshi: My son was born with Symbrachydactyly of the right hand. He was born with a thumb (slightly smaller than a regular thumb) and four nubbins where the other fingers should have been. The bones in the palm of his hand vary from 75% to 25% of the size they should have been. We chose to have surgery done when he was just over a year old to move a toe from his foot to where the pinky would have been. The surgery went great and he can now grasp and hold things that he otherwise would not have been able to do. We decided on the surgery after talking to a specialist at Primary Childrens Hospital/University of Utah Hospital in Utah. The surgery was completely optional and the Doctors never made us feel that he had to have the surgery or that there was anything wrong with leaving his hand the way it was. It was nice to talk to someone who sees this enough that you almost feel this is normal. Prior to talking to the Doctor we were told that the problem was ABS also. My husband and I did not make the decision for surgery quickly. We prayed about it and thought it through before we decided in favor of it.<br /> My son also turned out to be right-handed, so he has learned to write with his left hand and I am amazed every day what he can do. He has not let the lack of fingers on his hand keep him from doing whatever he wants. We still struggle with tying shoes, and it took a while for him to be able to button his clothes, and we have to cut and mend the fingers on his gloves each year, but he lives a normal life. Many people have commented that they never noticed his hand until after the 2nd or 3rd meeting because he does everything anyone else can do, so the average person does not notice it.<br /> The decision on what to do, if you do anything, is a tough one, but you'll know in your heart what is right for your child when you hear it.<br /> If you'd like pictures of what my son's had looks like now 9 years after surgery, you can email me at <a href="mailto:tiffsouix@gmail.com">tiffsouix@gmail.com</a> and I would be happy to send you some.<br /> Good luck to both of you! </p> http://limbdifferences.org/connections/topic.php?id=713#post-6783 Mon, 23 Jan 2012 15:17:48 +0000 davinder 6783@http://limbdifferences.org/connections/ <p>This is big relief Lance Major. My son has missing middle joints in his 3 fingers but his fingers are webbed (joined together), our doctor told us to wait for surgery to separate them until the bone grows. Or it's better to leave them webbed because with missing middle bone in those fingers they will be just hanging loose. Seems like its not really the case with your hands though. I have posted my question in another thread today and hopefully I will get an answer soon. </p> http://limbdifferences.org/connections/topic.php?id=1563#post-6782 Mon, 23 Jan 2012 15:09:34 +0000 davinder 6782@http://limbdifferences.org/connections/ <p>Dear Dr. Wint,</p> <p>We have twins and they were born around 2 months premature, one of them has the condition of syndactyly. The doctors and nurses were telling us in the beginning that after some period of time he has to go through a surgery to separate the fingers and after that his fingers and hand should grow without any issues except that his right hand will be a bit smaller than the left. </p> <p>A month ago an x-ray was done and doctor found that he is missing middle bone in all the 3 webbed fingers (first, middle and ring). Doctor said that because his grip is fine and he can move fingers there are chances that probably bones didn't show up in the x-ray so we should get the ultrasound done. The ultrasound was scheduled for today morning and technician told us the exact same thing that there is no middle bone all those fingers. My wife and I are devastated since then and I have been looking and trying to find out resources online that can give me some more insight into this condition. I m glad that I found this place where lots of parents like have gotten the answers. </p> <p>My son was born on March 16 2011 but since he was 2 months premature his ideal age is 8 months. Are there any chances that the bone in those fingers will show up at some point? We were also told that if the bone doesn't show up it's better not to separate the three fingers as they will be loose hanging with the hand, do you think that would be the right approach?</p> <p>Thank you so much! </p> http://limbdifferences.org/connections/topic.php?id=908#post-6781 Mon, 23 Jan 2012 14:56:15 +0000 davinder 6781@http://limbdifferences.org/connections/ <p>Hi steenie7, I m very happy that the surgery went fine and hopefully things have been going well with your son after the surgery. My son is going through very similar situation. We have twins and they were born around 2 months premature, one of them has the condition of syndactyly. The doctors and nurses were telling us in the beginning that after some period of time he has to go through a surgery to separate the fingers and after that his fingers and hand should grow without any issues except that his right hand will be a bit smaller than the left. A month ago an x-ray was done and doctor found that he is missing middle joint in all the 3 webbed fingers (first, middle and ring). Doctor said that because his grip is fine and he can move fingers there are chances that probably bones didn't show up in the x-ray so we should get the ultrasound done. The ultrasound was scheduled for today morning and technician told us the exact same thing that there is no middle bone all those fingers. My wife and I are devastated since then and I have been looking and trying to find out resources online that can give me some more insight into this condition. When I looked at one of your post that says bones have finally started showing up made me feel that there is still some hope! </p> <p>Can you please tell me what your doctor exactly said when he looked at the reports with missing bones? Did your son ever get the ultrasound done? Now it's been over 4 yrs since the surgery was done how is your son coping with it, does his hand function normal except that it's a bit smaller than the other hand? Did doctor ever tell you that if the bone doesn't show in next little while it's better not to do the surgery to separate his fingers? This is what our doctor has told us.</p> <p>Sorry for throwing so many questions at you but it was comforting to know through this website that we are not the only ones who is going through this and there could be still some hope with time.</p> <p>Thank you for listening! </p> http://limbdifferences.org/connections/topic.php?id=1561#post-6780 Sat, 21 Jan 2012 13:58:31 +0000 loveislove 6780@http://limbdifferences.org/connections/ <p>Hi Dr. Harley!</p> <p>My son was born 4 months ago with symbrachdactyly of the left hand. No other limbs are affected. This was misdiagnosed as ABS soon after delivery. We received the correct diagnosis when he was 2 months old from a hand specialist. He is developing normally and thriving, and we do not see any evidence of health problems. I have read that symbrachdactyly can be associated with Poland Syndrome, so I am wondering if there are any other health concerns we need to look out for? We are worried about associated heart problems or problems with the internal organs. Do you typically recommend that children receive echocardiograms or ultrasounds of the internal organs when presenting with symbrachdactyly? He has not been evaluated by a geneticist -- is this something you would recommend? As I said, he is developing normally, gaining weight and length, and has symmetrical pectoral muscles. We just want to know if there is anything else we should look out for, especially since he was misdiagnosed at birth. He did have full-body x-rays done at that time, but no additional tests, other than the standard ones performed on newborns.</p> <p>Thank you very much for your help! </p> http://limbdifferences.org/connections/topic.php?id=1560#post-6779 Fri, 20 Jan 2012 17:48:35 +0000 Katie M 6779@http://limbdifferences.org/connections/ <p>Hi Jsauvie - I saw your first post, but didn't say anything immediately, because our situations are a little different. But when I saw the second one, I felt that maybe you needed to talk a little. First of all, congratulations on your pregnancy. sounds like you'll be having a little girl. That's wonderful.</p> <p>At the same time, I hear that you've had some news from your ultrasound that reveals some limb differences for your baby. My child was born many years ago (26) missing his left forearm &#38; hand. We were in the delivery room, and had no knowledge that would be the case. When he came out and the doctor said, "It's a boy!" he then became very shocked-looking and we saw our baby's arm... Unlike your situation, however, it was just one - not both, and our son's feet are not affected either. But I can speak somewhat to your emotions and maybe encourage you a little.</p> <p>If the one limb is affected below the wrist, that is good! The more that's there, the better, I think. I saw a woman on tv many years ago who had no hands, but did have wrists, and she demonstrated putting in contact lenses, etc. I want to say her name was "Brie" something, and she was in news broadcasting - you may be able to google that? And as for limb differences in general, let me just say that I feel that there are very few things that people cannot achieve if they have their mind set. My son is a musician, and plays guitar (with one hand). At first when he said he wanted to learn guitar, we weren't sure how he would accomplish that - us thinking guitar was a 2-handed instrument. But he's really good at it - way better than many, and certainly way better than me! :)</p> <p>As for prosthetics, yes, many people choose not to use them. My son is one of those people. We did go thru all of the early stages of having him fit, etc. but as he got older, he decided not to. BUT maybe that's only because he could do everything just fine without it. For your little one, you'll have to sort of wait and see what works best. Plan to go and have one made, and see how she copes. My guess is she'll be crawling around in her own way, pulling up in her own way, figuring life out - maybe it will be with an artificial arm, maybe not. </p> <p>But I think that something you really can do - MUST do - is love her, love her, love her. Make her feel good about herself, her arms, her feet. It's going to depend what's on the INside more than the outside. The outside you can figure out - the inside is imperative. So try hard to get your mind around all of these changes. It's okay to be upset - it's hard news to receive. Things aren't the way you imagined they might be. But you can do this. Keep educating yourself. You have the time right now to find out as much as possible so that once you meet her, you can greet her confidently. </p> <p>There are several organizations that I know of for children with limb differences and their parents. Check out the Lucky Fin Project (also on Facebook) and there are many others as well. There are support groups springing up all around the country and the world. </p> <p>I'd also like to invite you to do two things. First, check out my sons' website. Like I said, I know our situations are a little different, and yet I think that people can find hope in seeing an adult that is doing well. He's a college graduate (music degree) and he's a married man (his wife is lovely). Life can be very wonderful for our kids, ok? go to tony memmel . com And also, here is my e-mail address (tmemmel@sbcglobal.net) if you feel like talking further or more in-depth. Contact me anytime, and I'll answer as soon as I can.</p> <p>God's blessings to you and your little family. Take good care.</p> <p>Katie M </p> http://limbdifferences.org/connections/topic.php?id=1560#post-6778 Fri, 20 Jan 2012 12:13:14 +0000 jsauvie 6778@http://limbdifferences.org/connections/ <p>Hello,<br /> I am 20 wks pregnant. Thus far my pregnancy has been one shock after another. For time's sake I'm going to skip to the most recent occurences. At 15.5 weeks, we were told our baby is missing the left hand below the wrist. This past Monday (then 19.5 wks), we were told the baby is also missing her right arm/hand below the elbow &#38; her left foot is smaller than the right - though they are not sure how severe the abnormality may be. I would really like to hear from anyone w/ similar challenges. I guess I'm looking for reassurance that this is going to be okay. I cannot conceptualize how my daughter will be able to do the most basic day-to-day activities w/ no hands. I would really like to hear what may be available to assist her w/ the most basic activities - like feeding or wiping herself. I have been reading about prosthetics but it seems like many people w/ at least one hand opt not to utilize b/c they are so cumbersome &#38; difficult to use. Will my daughter even have an option? Please if you are a parent w/ a child w/ no hands or an adult I would really appreciate hearing how independence is achieved. thank-you so much for sharing. </p> http://limbdifferences.org/connections/topic.php?id=1474#post-6777 Fri, 20 Jan 2012 08:46:23 +0000 msaurer 6777@http://limbdifferences.org/connections/ <p>Hi Nicole, it sounds to me your son may have what they call a traumatic vascular accident. An band syndrome would mostly show a definite line of change. Your son with the 3 nubbins does not sound like a band. My daughter, now 14 y/o, has the similar situation on her left hand. Wrist smaller, four nubbins, and a thumb with two bones instead of three. Her thumb is undersized. Dr. Upton, out of Children's Hospital in Boston is known to tackle these situations. We checked with him about 14 years ago and he could nothing for our daughter. Very informative man to talk to. I do not know if he still practicing. There is also a doctor out of the Cleveland Clinic. I'll try to get you that name. We live in Wisconsin. </p> http://limbdifferences.org/connections/topic.php?id=1559#post-6776 Fri, 20 Jan 2012 07:11:41 +0000 mjarosz 6776@http://limbdifferences.org/connections/ <p>She was born almost 6 weeks ago. When she was born, it was a complete shock to us. They didn't find anything on the ultrasound. Her right legt is shorter and used to be narrower but she is packing on the baby fat so can't really tell anymore. She is missing 3 toes on her right foot and her foot is smaller. When she was born the difference between her legs was a cm but now its about an inch. Her foot dosent look like its growing but her toes are. She had her first orthopedic appt at a month old and that's when we found out the name. He said that she will need a brace to walk to support her ankle but he has no worries about her being able to walk. We don't know if she will need surgery yet. to lengthen her leg. </p> http://limbdifferences.org/connections/topic.php?id=1558#post-6775 Tue, 17 Jan 2012 21:45:13 +0000 jsauvie 6775@http://limbdifferences.org/connections/ <p>Hello,<br /> I am 20 wks pregnant. Thus far my pregnancy has been one shock after another. For time's sake I'm going to skip to the most recent occurences. At 15.5 weeks, we were told our baby is missing the left hand below the wrist. This past Monday (then 19.5 wks), we were told the baby is also missing her right arm/hand below the elbow &#38; her left foot is smaller than the right - though they are not sure how severe the abnormality may be. I would really like to hear from anyone w/ similar challenges. I guess I'm looking for reassurance that this is going to be okay. I cannot conceptualize how my daughter will be able to do the most basic day-to-day activities w/ no hands. I would really like to hear what may be available to assist her w/ the most basic activities - like feeding herself. I have been reading about prosthetics but it seems like many people w/ at least one hand opt not to utilize b/c they are so cumbersome &#38; difficult to use. Will my daughter even have an option? Please if you are a parent w/ a child w/ no hands or an adult I would really appreciate hearing how independence is achieved. thank-you so much for sharing. </p> http://limbdifferences.org/connections/topic.php?id=1098#post-6774 Tue, 17 Jan 2012 17:47:15 +0000 nickc 6774@http://limbdifferences.org/connections/ <p>Hi all,</p> <p>Have just found this forum thankfully. </p> <p>Our son is 4 and a half months old and is believed to have mirror hand.</p> <p>We recently sought a second opinion from a respected practitioner in the UK who diagnosed it as mirror hand - our first diagnosis made no mention of this (probably not spotted because so rare).</p> <p>Our son has been born with 7 digits, no thumb, very restricted elbow movement, shortened humerus, dislocated shoulder and his wrist is in radial deviation. Following our recent consultation we now believe that he has absent radius and two ulna, as is the case for UD.</p> <p>We are right at the start of our journey, surgery won't start for a number of months yet given our son's tender age. At the moment we know that he will require surgery to remove the extra digits, a pollicization and also surgery to improve wrist movement. The elbow and shoulder problems are not well understood at the moment and we'll be talking to upper arm specialists very soon. </p> <p>We would be really grateful to hear from others and share information. </p> <p>We are in the early stages and naturally are worried for our son and what lies ahead. Like any parent we want to be sure that any surgery that we put our son through is worth it and will improve his quality of life.</p> <p>Any responses would be very much appreciated.</p> <p>My email is <a href="mailto:nick100774@hotmail.co.uk">nick100774@hotmail.co.uk</a></p> <p>Thanks<br /> Nick </p> http://limbdifferences.org/connections/topic.php?id=1474#post-6773 Mon, 16 Jan 2012 14:53:26 +0000 Katie M 6773@http://limbdifferences.org/connections/ <p>Devanshi - I cannot speak to your culture, or how your son will be viewed or accepted. All I can say is that in our culture (we live in the midwestern part of the U.S.) it is very much about who you are on the INside, that will dictate how you perceive and ultimately live your life. Strong values, good parenting, love, encouragement, motivating your child to do things that seem difficult will make him grow in ways that you can't measure with outward appearance. If he is a nice person, kind to others, good sense of humor, whatever, I believe he will be fine. I have come to realize that no matter what we look like, there are people who love us, and those who dislike us, for whatever reason. I try to minimize the 'disliking' but I guess it's life for all of us sometimes. Love your child, educate yourselves, and do your best to give your son a good life. That's all any of us as parents can do :) </p> http://limbdifferences.org/connections/topic.php?id=1557#post-6772 Sun, 15 Jan 2012 21:16:41 +0000 onlyeightfingers 6772@http://limbdifferences.org/connections/ <p>Hello there. I am a 28 year-old woman living in the UK. I was born with Ulnar Aplasia, or so I'm told, but apparently nobody can be sure exactly what I have. Basically my right arm is shorter, there is only one bone in the forearm, and I am missing two fingers - I have a thumb, and the first two fingers (syndactyly at birth). My wrist is fused and my elbow is hypermobile. I was also born with a hole in my heart. I had extensive work done on this arm throughout my childhood and despite having reasonable functionality, I still struggle physically with some things.<br /> I guess the reason I'm here is that I was touched by the number of people posting asking about their children born with similar conditions, and replies from people who's children are still young. I wondered if maybe anybody has wondered what the future holds for their children who have been born the way I was; when I was a kid, my parents were obviously not blessed with the invention of the internet and so had to muddle through with almost no help.<br /> So this is it - ask my anything. Anything at all! About the surgery I had as a child, my experience of school, university, jobs, discrimination, anything. I will answer any question asked in good faith, and don't be shy. I want to be able to share my experience of growing up and living as a disabled adult with parents of disabled children who perhaps worry about what life will be like for them in adulthood.<br /> Just as a background - I grew up in Scotland, I went to a normal school and did well without any special assistance. I did two degrees and I'm currently doing a master's degree. I don't work at the moment, but I usually work part time while studying. I have a wonderful long-term boyfriend and have never struggled in this area. I am confident and outgoing, and completely accepting of my situation, as I assume my screen name shows!<br /> Please, feel free to talk to me. </p> http://limbdifferences.org/connections/topic.php?id=1474#post-6771 Sat, 14 Jan 2012 12:00:15 +0000 Devanshi 6771@http://limbdifferences.org/connections/ <p>Hi Nicole, I totally understand your feelings. My son is now three months old, and has severe symbrachydactyly in his left hand - a much shorter palms, all nubbins. I don't just worry about how he will manage his day to day functions but also about how he will deal with people's comments, questions. I worry because I live in a society which is not very kind with differently abled people. I am trying desperately to find a course which is the best for my baby. And it's not easy. </p> http://limbdifferences.org/connections/topic.php?id=1105&page=3#post-6770 Sat, 14 Jan 2012 11:19:44 +0000 Devanshi 6770@http://limbdifferences.org/connections/ <p>Hi, my son was born with severe Symbrachydactyly - no thumb, four nubbins - three months ago. It took me a long while to accept that this was a condition I could do little to change. I still think of a 100 things that my baby may have difficulty doing and it breaks my heart. I am trying to explore all options - surgical and non-surgical - to address the problem. We have met some of the best doctors in India but we want to do an exhaustive research before choosing any one option for our son. My husband will be travelling to London in March where we've fixed appointments at GOSH, Dr Paul Smith and Dr Gilbert in Paris. We were looking for recommendations for doctors/hospitals in the US. Please help. We are also looking at prosthesis as an option. </p> http://limbdifferences.org/connections/topic.php?id=1345#post-6769 Fri, 13 Jan 2012 15:52:21 +0000 OneLuckyLady 6769@http://limbdifferences.org/connections/ <p>Hi everyone! I just sent all of you an e-mail about this =) </p> http://limbdifferences.org/connections/topic.php?id=1345#post-6768 Fri, 13 Jan 2012 14:30:19 +0000 tim99 6768@http://limbdifferences.org/connections/ <p>Hi Jenny,</p> <p>We don't have any regular meet-ups going, but my wife and I would love to meet you and your daughter! Maybe we can set something up one for one of the next few weekends -- like a meet-up at Navy Pier? (Colleen/OneLuckyLady if you'd like to get together as well this winter let me or Ethel know!) </p> <p>Feel free to email me: t*1@nospam<br /> (replace the * with berger and the nospam with gmail.com) </p> <p>Regards,<br /> Tim </p> http://limbdifferences.org/connections/topic.php?id=1105&page=3#post-6767 Fri, 13 Jan 2012 10:56:26 +0000 Katie M 6767@http://limbdifferences.org/connections/ <p>vckaushik: Congratulations on the birth of your son! I wish you every joy as you begin raising your little guy. There are many, many families like yourselves. In recent years, a great internet presence has been established. I recommend checking into the Lucky Fin Project (based out of Michigan) and Hands Down (Texas) to name just a couple. But there are many. And groups are springing up all over the world. It will be a good way for you to see other children and meet other parents with similar situations to your own.<br /> If you scroll up on this page, you can see that I posted earlier. My child was born missing part of his arm many years ago, and does very well. You may enjoy looking at his website as well, look thru his pictures and watch his videos. It is my hope that young parents find encouragement in meeting those who've gone before with a similar set of circumstances.<br /> Best wishes. If you ever need moral support, feel free to write me. My name is Katie and my e-mail address is <a href="mailto:tmemmel@sbcglobal.net.">tmemmel@sbcglobal.net.</a></p> <p>Katie M </p> http://limbdifferences.org/connections/topic.php?id=1105&page=3#post-6766 Thu, 12 Jan 2012 20:52:53 +0000 vckaushik 6766@http://limbdifferences.org/connections/ <p>Hi. Had no clue what Symbrachydactyly was ...untill couple of months back when my son was born with this! His right hand is effected... thumb and pinky looks okay though a bit smaller. Middle finger has just lower bone ( proximal Phalange) Index has 2 bones and ring finger has one...</p> <p>I am keen to see some photos or meet a kid who is older with same situation. I am confident after reading here that my son will just do fine... but as a parent am extremely worried too!</p> <p>This is a beautiful site and has given me the ray of hope!!<br /> Thanks/ </p> http://limbdifferences.org/connections/topic.php?id=865#post-6765 Thu, 12 Jan 2012 19:53:58 +0000 PJ Jones 6765@http://limbdifferences.org/connections/ <p>My family, the Smith family, has that condition. We have always called it "straight fingers" for a lack of a better word. It came through my father's side of the family. His mom and all of her "Smith" cousins had various numbers of fingers that had the middle joint missing. Dad had 5 brothers and sisters and all of the had some combination of the fingers. My dad was the only child that did not. My brother and I do not have the fingers. We have 6 1st cousins and 5 of them have some combination of the fingers. I know that at least some of their children (my 2nd cousins) have this situation with their fingers. I was born in 1957. I remember when I was a small girl that there were some hospitals that were researching what the deal was with these fingers. I don't think there was ever much of an answer. If anyone else has anymore insight, I would love to hear what you have to say. </p> http://limbdifferences.org/connections/topic.php?id=1512#post-6764 Thu, 12 Jan 2012 07:54:47 +0000 mjarosz 6764@http://limbdifferences.org/connections/ <p>My daughter has a shorter fibula. Her right leg and foot is shorter and she is missing 2 toes. We go to the orthopedist today to get a name. We didn't find out til she was born. At my last ultrasound at 20 weeks, she was stubborn and wouldn't turn to the other side so the tech could get measurements. She is a month old today. It scared me cuz I didn't know and couldn't prepare myself for when she was born. Everyone that have talk to with kids with limb differences say that she will be ok and that it wasn't my fault. </p> http://limbdifferences.org/connections/topic.php?id=1512#post-6763 Wed, 11 Jan 2012 15:27:10 +0000 anj1977 6763@http://limbdifferences.org/connections/ <p>Hi there. I know all to well what you are going through. 2 years we started the very same journey. We were only told at our first US that our baby had short legs. We were on pins and needles until the next week when we were sent to a larger facility. After 2 hours of laying on a table and having my belly beat up, the results were sent to a maternal/fetal specialist on staff and we were told to wait in a hall. After about another half hour we were called in and given the biggest blow of our lives. Our little guy had alot of issues. He had two holes in his heart, he had a shortened femur on his right leg, he was missing 75% of his left arm and was missing his fibula, femur and he had a vulgas( turned outward) clubfoot. We were in shock. I couldn't speak, I couldn't stop crying. We left the office with a feeling of hopelessness and confusion. There were alot of questions that had no answers. The rest of the pregnancy dragged on as we waited to see what was going to happen with this fragile child.<br /> Honey, I am so pleased to tell you that he is a beautiful 16 month old today! The holes in his heart have repaired themselves, or if you are a believer, God has healed our baby. In October we had to have Nicholas' foot amputated so he could be fitted for a prosthetic and have a chance to walk. It was the hardest decision we have had to make thusfar. He just got has prosthetic arm last week and is getting fitted for his leg next week.<br /> My only advice for you is to allow yourself time to grieve. I know this sounds strange, but you need to grieve for the 'perfect' baby you thought you were having, grieve for the struggles you will go through every day. You will learn that your baby is perfect and wonderful and that you would never be able to imagine them any other way.<br /> I wish you and your husband the best of luck and my prayers will be with you. Feel free to write back if you have any questions or just need to talk. </p> http://limbdifferences.org/connections/topic.php?id=1346#post-6755 Sun, 08 Jan 2012 21:05:05 +0000 jean56 6755@http://limbdifferences.org/connections/ <p>I just found this site. My daughter is 31 years old, she was born with three toes on her right foot, and the foot is smaller than her left, and her leg was shorter.<br /> She had the growth stopped in her left leg when she was 12. She went barefoot and also wore sandals at the beaches. The majority of people never even noticed her foot.<br /> Oregon mom I agree with you fully on letting them be comfortable with others. My daughters friends never treated her any differently, they accepted her for who she is.</p> <p>Stephanie7 I think its great that you posted on here, to me you kids are very special. </p> <p>I always thought that my daughter was the only one who had this condition. All these children will do just fine in life. </p>