http://limbdifferences.org/connections/ An online resource for families and friends of children with limb differences. en Wed, 22 May 2013 15:21:22 +0000 http://limbdifferences.org/connections/topic.php?id=5598#post-14785 Sun, 19 May 2013 10:17:44 +0000 Dr. Wint 14785@http://limbdifferences.org/connections/ <p>First, osteoarthritis is an unlikley diagnosis in a 29 year old even with a limb difference.<br /> 2. If you had arthritis at your age i'd be more concerned with an inflammatory or infectious type of arthralgia or arthritis and that would not just affect one part of your body, youd have other symptoms "all over"</p> <p>3. Many people with type 4 thumbs may also have an unrecognized bit of mild radial hypoplasia that also affect the distal radius and its relationship with the ulna. this may be a source of wrist pain or seem to be but one needs to very careful about assuming too much it you do have a light bit of shortening of your radius because it is a rare person that has significant deficit due to this and one shouldn't over blame that</p> <p>4. A post traumautic bit if synovisitis or inflammation or tendonitis is possible, subtle joint swelling due to an inure. there are times when a course of NSAIDs or an injection can help</p> <p>5. Revisits the possibility of a fracture or ligament injury.or avulsion injury as there are subtle fractures or ligament injuries that appear late or are not evident unless ust he right projection is used. The radiologist is not "wrong" its just that the right exam was not used. Even for a "normal" wrist with normal xrays there are times that scaphoid fractures or ligament injuries go unobserved the first time through</p> <p> 6 If the radiologists has trouble interpreting the films get them and you ...in to see a hand surgeon who has an adult practice but also has some knowledge of / with congenital limb differences. Many hand surgeons fit this profile. </p> <p>7. If you like you can post X-rays on a link as it might help this discussion for all of us to learn from as Im sure there are many others who have found themselves in a similar situation </p> http://limbdifferences.org/connections/topic.php?id=5599#post-14784 Fri, 17 May 2013 11:37:44 +0000 loristahl68 14784@http://limbdifferences.org/connections/ <p>Thanks for posting this information, Katie!</p> <p>Just FYI anyone who is dealing with Macrodactyly in particular, our 8 y/o daughter is scheduled for her first surgery August 6th. If you would like to ask questions about how it goes, please feel free to email me at <a href="mailto:loristahl68@yahoo.com.">loristahl68@yahoo.com.</a></p> <p>Thanks...<br /> Lori </p> http://limbdifferences.org/connections/topic.php?id=5599#post-14783 Tue, 14 May 2013 17:38:16 +0000 KatieM 14783@http://limbdifferences.org/connections/ <p>Hello... My name is Katie M. I wanted to share some supportive limb difference organizations with you. Sometimes even when people aren't talking on this site, they're still reading the information, so I thought this may be helpful.</p> <p>First of all, I wrote a book and published it last fall about my/my family's experiences of raising our oldest child. The book's title is: "Five Fingers, Ten Toes... A Mother's Story of Raising a Child Born with a Limb Difference." In the book I share many of the emotions I felt after my son's birth (missing his left forearm and hand) as well as so many of our initial struggles, and finally successes. You can access the book thru Amazon and thru my website: <a href="http://www.katiekolbergmemmel.com" rel="nofollow">www.katiekolbergmemmel.com</a> You can access information about my son, Tony Memmel, who has become a professional singer/songwriter and against all odds, taught himself to play the guitar (one-handed). Watch his videos and check his schedule of performances at: <a href="http://www.tonymemmel.com" rel="nofollow">www.tonymemmel.com</a> He'll be traveling soon - possibly coming to a town near you!</p> <p>The Lucky Fin Project is a great group of people who have formed largely thru Facebook, but they also have a separate website. The LFP's founder, Molly Stapelman, has a young daughter with symbrachydactyly. She started the organization with the intent to "Celebrate, Educate, Support and Unite" those (many many who are children) with limb differences and for their families. <a href="http://www.luckyfinproject.org" rel="nofollow">www.luckyfinproject.org</a></p> <p>At "Living One-Handed," Ryan Haack has taken on as his 'mission' to make videos, helping people to see and know that living with a limb difference can be 'okay.' He is an adult man, married with children, and can answer many questions of "...but how do you...?" <a href="http://www.livingonehanded.com" rel="nofollow">www.livingonehanded.com</a></p> <p>There are also limb difference organizations throughout the U.S. I know of many - Massachusetts, Texas, Ohio, Minnesota... If you are struggling and looking for other young families with similar situations, google limb differences and see what pops up. </p> <p>Overall, there's nothing that helps more in this world than getting to know others who are going through what you are... believe me, I know.</p> <p>Take care, and write back if you have any questions! God's Blessings!</p> <p>Katie M </p> http://limbdifferences.org/connections/topic.php?id=5597#post-14782 Tue, 23 Apr 2013 13:38:40 +0000 loristahl68 14782@http://limbdifferences.org/connections/ <p>Katie,<br /> Thanks so much! I will definitely look into your son's music!<br /> I've looked at Lucky Fin on facebook, posted, never heard anything from anyone. But, it's been a few months so I should probably check into it again. I've gotten away from facebook some, so I maybe just missed some relevant posts....<br /> Thanks again,<br /> Lori </p> http://limbdifferences.org/connections/topic.php?id=5597#post-14781 Tue, 23 Apr 2013 12:48:10 +0000 KatieM 14781@http://limbdifferences.org/connections/ <p>Aahh, okay - I'll keep my ears open for Virginia... :) Did you contact the Lucky Fin Project yet? There are people from all over the country - even the world. I think 20 countries have become involved. They're on Facebook, and very easy to communicate with.</p> <p>ALSO, my son is a musician and will be heading east for a few weeks in May/June. Check his website for dates and locations. It might be awesome for your family to meet him as well...? Go to <a href="http://www.tonymemmel.com" rel="nofollow">www.tonymemmel.com</a></p> <p>Best wishes </p> <p>Katie M </p> http://limbdifferences.org/connections/topic.php?id=5597#post-14780 Tue, 23 Apr 2013 10:10:03 +0000 loristahl68 14780@http://limbdifferences.org/connections/ <p>Thank you, Katie- I have checked in to that, but we're in Virginia. I do try to keep up on their website, so maybe something will turn up!<br /> Lori </p> http://limbdifferences.org/connections/topic.php?id=5590#post-14779 Tue, 23 Apr 2013 08:28:54 +0000 KatieM 14779@http://limbdifferences.org/connections/ <p>My son, now 27 (an adult), was born missing his left forearm and hand. I wanted to ask you this: Since you mentioned the event was a 'sports day' at school, how interested was she in 'sports?' For example, did they play t-ball? basketball? What were the organized events?</p> <p>The reason I'm asking is that we found that when kids are focused on an activity, they are less likely to get off task (like just running around and chasing). AND if your child is really interested in the activity, (which are usually being supervised by an adult - teacher, coach or parent) and actually displays some skill in the activity, kids will actually WANT your child on their team because they're GOOD! Sure, there may be some questions, just because your child is a little different, but it may not be so unconstructive. I would try to find something your child really enjoys and work on those skills at home - and then encourage more focused participation in the future...</p> <p>Just a thought...? Any thoughts?</p> <p>Katie M </p> http://limbdifferences.org/connections/topic.php?id=5596#post-14778 Tue, 23 Apr 2013 08:15:56 +0000 KatieM 14778@http://limbdifferences.org/connections/ <p>Hi SherriLiz: </p> <p>My son is now an adult, but he was born missing his left forearm and hand. From the time he was born, I worried if he would 'find love' or if anyone would want to date him or hold his hand. Now that he's married to a beautiful young woman those thoughts of mine seem less important, and yet it was a legitimate concern at the time. In reality, he had several lovely young women in his life who didn't seem to mind that he had one arm... For him, I think it had more to do with displaying a fun sense of humor and a lot of interests (sports, music, etc) that people liked being around him. </p> <p>That said, it is possible that there may not be as many people/men out there who will embrace your daughter's situation. But the one/ones who will, will likely be great individuals... people of quality (hopefully) who don't just focus on outward appearance, but what's on the inside. If this sounds rote or trite, I'm sorry, but it is the honest-to-God truth. If a prosthetic leg is part of your daughter's life, then someone has to be evolved enough not to care about it.</p> <p>I also have a daughter with all limbs, and dating wasn't always smooth sailing for her either. It can be rough and brutal out there, but Bottom line, I think that dating advice is true for all people in all of life's circumstances... Encourage your beautiful girl to get busy doing something that she loves doing - whatever that is - and someone will see her face light up, see her enjoying her life, and not be able to stay away.</p> <p>Katie M </p> http://limbdifferences.org/connections/topic.php?id=5597#post-14777 Tue, 23 Apr 2013 07:58:14 +0000 KatieM 14777@http://limbdifferences.org/connections/ <p>Hi Loristahl68! Depending on your child's limb difference, you could check with an organization called, "Helping Hands Foundation." I believe they are in Massachusetts. </p> <p>Katie M </p> http://limbdifferences.org/connections/topic.php?id=5598#post-14776 Tue, 26 Mar 2013 08:22:48 +0000 alicia 14776@http://limbdifferences.org/connections/ <p>correction: holding the computer-mouse: i turn my wrist "OUTward" --&gt; more to the right side </p> http://limbdifferences.org/connections/topic.php?id=5598#post-14775 Mon, 25 Mar 2013 18:08:39 +0000 alicia 14775@http://limbdifferences.org/connections/ <p>Hello Dr Wint,</p> <p>I'm almost 29 now. I have the "floating thumb" on my right hand and I have had NO surgical interventions (never had pollicization, no amputation,... nothing). I do a lot of sports and a lot of computer work. Not so long ago I hurt my right hand/wrist in doing sports. I thought a little sprain or ... 4 days later I went to the familydoctor for another problem and asked him to check. He thought the same and prescriped a patch to relieve, but without result. After 2,5 weeks my doctor suggested to go and have a radio and echo to rule out tendonproblem. But he already had arthritis in mind. The radiologist had also difficulties in finding the problem since "my anatomy is different" he said.<br /> My symptoms:<br /> - after a long day computer work with the computermouse I have some pain on the radial side of my wrist, I've noticed that I'm not very ergonomic in holding the mouse, where people put the thumb, I put my indexfinger and I turn my wrist a litte inward<br /> - since the "sport accident" I feel like my wrist is less flexible, I cannot do a full extension, and pulling on my fingers to get a better extension gives pain on the radial side<br /> - it doesn't hurt so much, only for particular movements like pushing up from a chair, or do a push up from anything in general<br /> - sometimes at night I come awake for 3 seconds and feeling some minor pain</p> <p>Now I feel like I'm still a bit young to have arthritis, are you aware of "cases like me"?<br /> Am I more likely to have "early arthritis" because of my anatomy or because of using my hand without thumb,...?<br /> What is your opinion?<br /> Have you had any experience with this?</p> <p>Thank you for your opinion. </p> http://limbdifferences.org/connections/topic.php?id=5597#post-14774 Mon, 25 Mar 2013 08:02:32 +0000 loristahl68 14774@http://limbdifferences.org/connections/ <p>Does anyone know of anything like this on the East Coast?!<br /> Wish we could get to Illinois- thanks for posting.<br /> Lori in VA </p> http://limbdifferences.org/connections/topic.php?id=5597#post-14773 Thu, 21 Mar 2013 21:33:11 +0000 beth 14773@http://limbdifferences.org/connections/ <p>Join us for family meet-up<br /> on Saturday,<br /> March 30th<br /> from 2-4pm<br /> at the Shriner’s Hospital in Oak Park, Illinois.<br /> We hope to see your family there!</p> <p>The purpose of our meet-up is to allow children with limb difference the opportunity to interact with other children like them and for parents to encourage and support each other. </p> http://limbdifferences.org/connections/topic.php?id=5596#post-14772 Mon, 11 Mar 2013 12:57:46 +0000 SherriLiz 14772@http://limbdifferences.org/connections/ <p>I have a beautiful 17-year-old daughter who was born with fibular hemimelia and wears a prosthetic leg. She has lots of friends, but never gets asked out on dates like her friends. I was just wondering if there other parents out there of teenagers who went through the same thing. I just want her to be happy and live as "normal" teenage life as possible. </p> http://limbdifferences.org/connections/topic.php?id=1545#post-14771 Sat, 09 Mar 2013 20:24:23 +0000 Dr. Wint 14771@http://limbdifferences.org/connections/ <p>please see the other thread for my answer </p> http://limbdifferences.org/connections/topic.php?id=1432#post-14770 Sat, 09 Mar 2013 20:20:10 +0000 Dr. Wint 14770@http://limbdifferences.org/connections/ <p>Thank you for posting the paper and podcast.<br /> For the paper they are simplty placing a piece of bone in the thumb base where it is floppy, fuction does not likely change, When they state function is good its really the same as someone who has not had reconstructive options such as pollicization for a type 3b or 4 thumb. The paper acknowledges that pollicization is not socially acceptable thus the push for this procedure. As the reason for surgery this is due cultural predjudice you must be aware that it does nothing for function.</p> <p>The podcast talks about type 2 thumbs and stabilizingthe metacarpophalangeal (mcp) joint. this is a far diff scenario than te 3b or 4 thumbs with a poor carpometacarpal ( cmc) joint. This is a different situation.</p> <p>Again as a hand surgeon practicing in the US I do not recommend this type of stabilization surgery for a 3b or 4 thumb. But if it is a personal/cultural/cosmetic issue just know that is what it is.</p> <p>Putting a bone segment may succeed in making a stable post ie making the very small thumb a very small thumb that is now fixed in place. it will not change the outward appearance, the size the girth the function.It will only if sucessful make the floppy base rigid </p> http://limbdifferences.org/connections/topic.php?id=1346&page=2#post-14769 Thu, 28 Feb 2013 15:29:22 +0000 ninie 14769@http://limbdifferences.org/connections/ <p>HI Everyone.. I am sorry to have never gotten back. My daughter is walking and running. Her right foot is still shorter and smaller then her left foot. I still haven't found a good explanation as what is the cause. Its very hard, she turned 2 and all she loves is shoes and I can never really find shoes that fit right. I have to buy 2 shoes and the shoes aren't cheap.</p> <p>Do any of you know a doctor in miami? I thank all of you so very much to be on this blog.<br /> Hope to hear from all of you and hope all is well.</p> <p>ninie </p> http://limbdifferences.org/connections/topic.php?id=1432#post-14768 Mon, 25 Feb 2013 06:17:25 +0000 angle 14768@http://limbdifferences.org/connections/ <p>Dr Wint,<br /> I found a recent paper about Type VI case:<br /> <a href="http://www.ncbi.nlm.nih.gov/pubmed/22170244" rel="nofollow">http://www.ncbi.nlm.nih.gov/pubmed/22170244</a><br /> There is also some discussions about it:<br /> <a href="http://jhs.sagepub.com/site/Podcast/podcast_dir.xhtml" rel="nofollow">http://jhs.sagepub.com/site/Podcast/podcast_dir.xhtml</a></p> <p>What do you think of this method?<br /> Thank you! </p> http://limbdifferences.org/connections/topic.php?id=1545#post-14767 Mon, 25 Feb 2013 06:07:40 +0000 angle 14767@http://limbdifferences.org/connections/ <p>Dr Wint,<br /> I found a recent paper about Type VI case:<br /> <a href="http://www.ncbi.nlm.nih.gov/pubmed/22170244" rel="nofollow">http://www.ncbi.nlm.nih.gov/pubmed/22170244</a><br /> There is also some discussions about it:<br /> <a href="http://jhs.sagepub.com/site/Podcast/podcast_dir.xhtml" rel="nofollow">http://jhs.sagepub.com/site/Podcast/podcast_dir.xhtml</a></p> <p>What do you think of this method?<br /> Thank you! </p> http://limbdifferences.org/connections/topic.php?id=5595#post-14766 Sun, 10 Feb 2013 11:41:45 +0000 Michelle1959 14766@http://limbdifferences.org/connections/ <p>Below is a site with instructions for making your own custom latex glove. I have not tried it. I think it is a great idea. Does anyone know of a place that makes custom winter gloves or mittens?</p> <p><a href="http://www.liquidlatex.com/makingglove.html" rel="nofollow">http://www.liquidlatex.com/makingglove.html</a></p> <p>Thanks,<br /> Michelle </p> http://limbdifferences.org/connections/topic.php?id=5595#post-14765 Fri, 08 Feb 2013 21:09:41 +0000 Dr. Wint 14765@http://limbdifferences.org/connections/ <p>Does anyone know of source for custom latex gloves that can be made for an adult with a unique hand difference? </p> http://limbdifferences.org/connections/topic.php?id=5594#post-14764 Fri, 08 Feb 2013 21:08:46 +0000 Dr. Wint 14764@http://limbdifferences.org/connections/ <p>Does anyone know of source for custom latex gloves that can be made for a specific person with a unique hand difference? </p> http://limbdifferences.org/connections/topic.php?id=5593#post-14763 Wed, 23 Jan 2013 15:38:33 +0000 zmansmommy 14763@http://limbdifferences.org/connections/ <p>Hello,</p> <p>I have a 28 month old who was born missing the ulna in both arms with fusion in the elbows. He gets about a 90 degree bend out of both. He has thumb &#38; index finger on the right hand &#38; thumb, index, &#38; middle fingers on the right hand. He has fusion in the middle finger, so it stays at a bend. I am apart of facebook &#38; am a member of a ton of limb difference groups &#38; pages, but have not been lucky to find anyone who has this limb difference. I am a member of the ulna group on yahoo, but it isn't active, &#38; no one writes back. I would love feedback, recommendations, &#38; any tips from someone who has this or a child who has this. I almost feel alone!! Please help! </p> http://limbdifferences.org/connections/topic.php?id=4969#post-14762 Thu, 10 Jan 2013 09:44:49 +0000 loristahl68 14762@http://limbdifferences.org/connections/ <p>Thank you, Dr. Wint.<br /> Theoretically, what you said about this site is true- however, I have had absolutely no luck with trying to actually converse with any parents or patients. Someone gave me a link to a facebook page that I hoped would lead to connections, also, but so far no one has contacted me there either. There has been no "flow of information", only bits and pieces, all contradictory and over a long span of time.<br /> Anyway, we are doing what we can, and talking more with our daughter about "options", and hopefully we will be happy with our decisions. I just wish she had someone to talk to- a peer- so she wouldn't feel so isolated. </p> http://limbdifferences.org/connections/topic.php?id=4969#post-14761 Wed, 09 Jan 2013 22:54:20 +0000 Dr. Wint 14761@http://limbdifferences.org/connections/ <p>The nice thing about sites like this is that you can hear other opinions and ask questions. So you do have well informed advocates, There are surgeons such as myself and the countless children and families that have come before. But you are right there is no one that is coordinating that flow of information for you. I'd ask to speak to other children and other families that your surgeon has taken care of. Of course Macrodactyly is not a common condition and every one feels very "right" about their decision. I can only relay to you what I see and how older children who have a probable amputation delayed are often much happier when that delayed amputation of a poorly functioning macrodactylous digit is finally excised. However, there will be someone who vehemently tells you that tney are just fine or happy that they did not have a procedure. Families and individuals are ambivalent or against surgery because they do not see many children over many years, they see themselves or their own child. Hand surgeons such as myself who work with congenital hand differences such as this see many children over the years. Neither is wrong just different points of view. </p> http://limbdifferences.org/connections/topic.php?id=5591#post-14760 Thu, 13 Dec 2012 08:26:27 +0000 HollyP 14760@http://limbdifferences.org/connections/ <p>Thank you soooo much Melissa! I will definitely look into the facebook and symbrachydactyl on facebook, I hadn't thought of that. I will forward my friend your email, thank you so much for responding! </p> http://limbdifferences.org/connections/topic.php?id=4971#post-14759 Wed, 12 Dec 2012 09:41:46 +0000 loristahl68 14759@http://limbdifferences.org/connections/ <p>Thank you so much, Melissa! I will check out the Lucky Fin project on Facebook when I get a chance. My email address is <a href="mailto:loristahl68@yahoo.com.">loristahl68@yahoo.com.</a><br /> Have a great day!<br /> Lori </p> http://limbdifferences.org/connections/topic.php?id=5591#post-14758 Wed, 12 Dec 2012 09:28:33 +0000 OneLuckyLady 14758@http://limbdifferences.org/connections/ <p>Oh Holly, Holly, Holly...did you ever come to the right place. Go on facebook and look up the Lucky Fin Project. They are great with networking families. There is laso a symbrachydactyly page and a beautiful limb differences page, etc. You will find many families there =) My Julia is 6 and has symbrachydactyly. If your friend ever needs to talk tell her to e-mail me <a href="mailto:lisvarner77@yahoo.com">lisvarner77@yahoo.com</a> =)</p> <p>Melissa </p> http://limbdifferences.org/connections/topic.php?id=4971#post-14757 Wed, 12 Dec 2012 09:25:37 +0000 OneLuckyLady 14757@http://limbdifferences.org/connections/ <p>Hi Lori. My daughter is 6 and has symbrachydactyly. I wanted to suggest that you look up the Lucky Fin project. They are on facebook. Facebook has a lot of great pages for people with limb differences. Maybe you can find someone on there who has a child with a similar difference. My e-mail address is <a href="mailto:lisvarner77@yahoo.com">lisvarner77@yahoo.com</a> and would love to chat =)Also, I am on facebook..Melissa Harrison Varner.</p> <p>Melissa </p> http://limbdifferences.org/connections/topic.php?id=5592#post-14756 Tue, 11 Dec 2012 13:10:26 +0000 CimenaJ 14756@http://limbdifferences.org/connections/ <p>My daughter is 6 months old and was born with what the doctors are considering aphalangia. She has a fully functioning thumb (3 bones), 2 bones in both the index and pinkie, but no bones in the middle and ring finger. The doctor says that she is a candidate for surgery to implant two bones from her toes to her middle and ring fingers. I am not exactly in support of the surgery but am trying to do due diligence and determine if the surgery would improve her quality of life. I am wondering if anyone who has experienced a similar situation. Or if there are those who could speak to both sides- surgery or no surgery. Thanks! </p> http://limbdifferences.org/connections/topic.php?id=4971#post-14755 Mon, 10 Dec 2012 13:45:03 +0000 loristahl68 14755@http://limbdifferences.org/connections/ <p>I am trying again to find someone with a similar condition (Macrodactyly Lipotomosa) to my 8 y/o daughter's so that she could connect (over email?) and not feel so alone. Is there anyone out there who would like to share experiences with my daughter?<br /> Thank you in advance,<br /> Lori </p> http://limbdifferences.org/connections/topic.php?id=1310#post-14754 Mon, 10 Dec 2012 13:29:49 +0000 loristahl68 14754@http://limbdifferences.org/connections/ <p>Hi, Cathy,<br /> I'm not sure if you're still involved with this site, but thought I'd give it a try. I'm curious to know if you and your son went ahead with the amputation, and if anything else has developed for you. I have a daughter with not only an enlarged index finger, but middle finger as well and swelling of the entire arm. So far, we have not had any surgeries but wonder what course to take. If you wouldn't mind sharing your son's experiences, it might be helpful.<br /> Thanks,<br /> Lori </p> http://limbdifferences.org/connections/topic.php?id=5591#post-14753 Sun, 09 Dec 2012 18:05:30 +0000 HollyP 14753@http://limbdifferences.org/connections/ <p>Hi everyone,<br /> I am looking for a support group or a meetup for anyone with children in the central Florida area. My best friend has a 2 year old daughter with symbrachydactyl, who is starting to notice and be distraught about the difference of her hand... I wanted to find a mom with an older child that could possibly be a mentor-type (a kid in the 6-12 range) who would like to be an older "buddy" to a little girl experiencing something similar... I think it could be beneficial to both kids and am not sure where to look for such a meetup. Any ideas would be greatly appreciated! Thanks in advance, we are in the Daytona Beach area...</p> <p>Holly </p> http://limbdifferences.org/connections/topic.php?id=4969#post-14752 Wed, 28 Nov 2012 14:24:32 +0000 loristahl68 14752@http://limbdifferences.org/connections/ <p>Thank you, Dr. Wint, for replying. Of course you are right that we have made a decision for her all along.<br /> It's just so hard, with so many variables and differing testimonies and frankly, not many hard facts regarding this condition. Of course it has been surgeons who have recommended surgery, whereas people with the condition or their families are for the most part ambivalent. I do understand that healing is faster and regaining use of affected limbs is more effective the younger the patient is. I just wish she had a well-informed advocate in the medical field- like a medical case manager I guess- to help us navigate. </p> http://limbdifferences.org/connections/topic.php?id=4969#post-14751 Tue, 27 Nov 2012 23:27:39 +0000 Dr. Wint 14751@http://limbdifferences.org/connections/ <p>As a physician, a surgeon and a parent it is never ever a simple question or answer. But the correct answer is at age 18 then legally the decision is theirs. Until then the decision is really yours to make and to consent to treatment. You can integrate your child into the decision just as you would for anything else but you must consent for treatment. To choose no treatment os a bit trickier but the idea that you wait until he or she is "old enough to decide on their own when it deals with a congenital issue that typically is operated upon at an earlier age is not a straightforward one. and not really a proper litmus test.<br /> Ultimately I feel it is for the parents to decide for their child, that is the parents role.<br /> Sure it helps when you get consent or cooperation from the child but as a parent you should present your child with what you feel is the proper course of action.</p> <p>By delaying the decision for surgery , you are in fact making a decision for no surgery for the child anyway at this time. </p> <p>. </p>