Polydactyly - baby born with extra digit

Re: Polydactyly - baby born with extra digit

• CplusJ=S member

  October 2014

  If it isn't causing him pain and is only a cosmetic issue why don't you want to wait?

  

  
  

  
  

  
  

  

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• kateronium member

  October 2014

  My hubby was born with an extra pinky toe on both feet that were removed when he was a baby. He's only got a little tiny scar you barely notice

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• JanisBaby14 member

  October 2014

  See if you can get a referral to like a childrens hospital for a surgeon who would do it at a younger age? I work at a children's specialty hospital and I swear I see them do it to week old infants.

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• GlitterMuffin914 member

  October 2014

  My stepsister was born with one. I believe they did the tie thing and it took care of itself. She doesn't have a little nub left or anything like that. This was about 10 years ago.

  
  

  
  

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• roselyn81 member

  October 2014

  Thanks for the replies. We saw a plastic surgeon in our network (we are with an HMO). She wasn't a pediatric surgeon so that was one thing against her, although she said she has done these kinds of surgeries before. But she feels better waiting until he is a year old since the hand will be bigger and the baby will be older. She prefers surgery over tying it off and letting it die. She said that if we tie it off there may be a stump left which can grow as he grows and cause sensitivity when it is touched. I have heard of so many people just having it tied off with no repercussions! I am freaked out at the idea of watching the little digit die off gradually too. It scares me!!
  
  Since we were told this would be a "cosmetic" procedure and it's not covered, we are looking outside of our HMO for a second opinion, whatever it costs us. I just can't believe our baby was born with this, as nobody on either side of our families has this. My husband did mention an aunt who had webbed toes...I'm not sure if that can be caused by the same gene as polydactyly.
  

  

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• MLE_C2B member

  October 2014

  I have a family friend who's insurance wouldn't pay for a similar surgery but then the spare skin kept getting snagged so they appealed and finally insurance paid. It was a nightmare fight but they won.

  
  
  
  

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• MissOjeB member

  October 2014 edited October 2014

  Hi, my little girl was born with an extra thumb in January 2012. Her dad spotted it when he was dressing her in the labour ward. To be honest it didn't phase me much, I was just grateful she wasn't missing a digit. The hospital referred her to a plastic surgeon (I did make my own enquiries about going private to speed it up but being cosmetic it wasn't covered). We met the surgeon who specialised in hands. She had bone and a thumbnail on her digit so was a little trickier than just skin. They prefer not to perform surgery in babies under 12 months unless they're sick and it's necessary. My daughter went for her surgery at exactly 51 weeks old. I brought her to the theatre at 11am (poor mite was starving from fasting) and she was out at 12ish. She was groggy but drank 12oz of milk immediately, slept for an hour, had a bowl of weetabix and was discharged by 3.30 at the latest. The surgery went really well. The extra thumb was removed but her ligament in her main thumb was very weak so he inserted a tiny wire in it to help strengthen it. Her bandages which were thick but soft (no plaster Paris) went all the way upto her shoulder to fully protect her from getting them off or damaging herself. She adjusted amazingly well, never got frustrated or anything. The dressing didn't have to be changed until we went back to the hosp 2 weeks later. The wire came out when the dressing was been changed, it was so thin that it just slid out pain free unknown to baby. A custom splint was made for her there to keep the thumb in position while it healed. We went back for checkups every 2 weeks for a while getting a new splint made each time as she was growing so a new one had to be adjusted to her size. Gradually her bandages got smaller and smaller until they were gone. Almost 2 yrs later and her thumb still looks swollen (but only to us who know she's had intricate surgery). As she grows the swelling will merge in with a growing thumb and people will not notice anything. Obviously she'll have a tiny scar mark but it won't catch the eye. I must admit I thought the extra digit was very cute but for my daughters sake I had it removed. I know she'll ask me about when she's a bit older so I've a little box kept with photos and various details of her surgery. I also got a incredibly detailed beautiful bronze hand cast made the week before her surgery so she'll see exactly what it looked like! When I first discovered my precious little girl had polydactyly I trawled the net looking for info and found very little info. I understand exactly how your feeling and having been there and done that I can tell you to please don't worry because babies are so versatile and have no fears and it's us mums who fret the most. Best of luck with it all and your son will be fine! If you need any info at all feel free to ask me. Hugs xx

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• roselyn81 member

  October 2014

  MissOjeB, thank you for sharing your story! What a lot to go through, but it sounds like everything went very well. I have to admit that I think my baby's little extra digit is kind of cute, but of course we have to have it removed for social reasons etc. I'm also worried it could get caught in things and cause injury (his extra digits dangle from his pinkies). Anyway, it's amazing that although the pediatrician says it's fairly common, navigating which specialist the baby should see, and whether this would be covered etc. has been fairly difficult. There really isn't that much on the internet about it either. I have been taking photos of his hands also, just so we remember what they looked like and so that we can show him photos when he is older. What a sweet idea to have a bronze cast made
  

  

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