Polydactyly

Carrie - posted on 12/15/2008 ( 40 moms have responded )

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My son was born May 2008 with one extra little thumb. He will be going for surgery closer to his 1st birthday. Does anyone else have a child with the same condition that can tell me how the surgery went for there child? Wish I didn't have to put him through it. :(

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Cindy McCombe - posted on 09/11/2013

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Hi there. My name is Cindy McCombe Spindler, and I am the president and founder of a company called AbilityCatcher. A good friend of mine named Anthony DiMatteo recently wrote an article about his son Graham's polydactyly thumb. I thought you might be interested in reading it:
http://bit.ly/17QFtSC

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Ginny - posted on 03/04/2014

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This really just made my day! All of these things are happening here and after 17mths with my daughter I couldn't imagine her having only five fingers on her right hand! Everyone thinks it's super cool and seeing the story of a child that thinks it is awesome to have an extra digit really puts things in perspective for me. We have been heavily leaning towards keeping Ember's extra and this has made that decision even more easy for me! Can't wait to share Graham's story with Ember and her daddy! :)

Emily - posted on 02/07/2014

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How much was the surgery? My little guy was born with a split thumb and will have surgery at the beginning of next year.

Chea - posted on 12/26/2013

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Growing up, I've never had a problem with being teased about my deformed thumb. People would ask me what happened to it out of curiosity and I've told them I had an extra thumb. It was thought to be really fascinating or very "cool". They don't notice it unless I shove it in their faces. Surgery is beneficial though but you can get through life with an extra. I was never bothered by the look of my thumb. I don't like the rare phantom pains I get. They're random. When you are a kid, a kid notices small things or little details. It depends, if you really want to give your little one that kind of attention drawn to them.

Chea - posted on 12/26/2013

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I'm 26 years old and was born with an extra thumb on one hand. I still feel phantom pains from time to time. And sometimes I would freak out that my thumb is growing again. I got it surgically removed when I was 3 years old. I was told I cried a lot. My thumb is club like now. Maybe the new technology will do a better job. It just feels like something is missing. Freaaakkky OMG

Waff - posted on 07/31/2013

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My daughter has an extra thumb on her right hand. no one ever notices it until i showed them. it is perfectly positioned near her original thumb. I'm thinking of keeping it or have it removed by surgery. but her pediatric said it is ok to keep it. My culture also believe that if you have extra digits, Good luck always comes to you. but i'm worried about her future, i know people will not treat her will. what can i do? need advice.

Ginny - posted on 05/14/2013

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My daughter has an extra thumb one her right hand. I am at a loss of what to do. The doctor said that surgery could cause a z thumb deformity and I am wondering if it is better to just keep her extra. She is so very perfect to me. What would you do? I am glad that there are more of you out there that I can relate to and talk with!

Allison - posted on 03/31/2013

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Hi there. I just came across this during a process of learning about the alleles for polydactyly. I'm 22, and was born with extra pinkies on each hand, and an extra little toe on each foot. It came from my mothers side, from her great grandfather, but she wasn't born with polydactyly herself. From what I know of my situation, one of my hands had a functioning extra finger and the other did not. My parents decided on the surgery route and it happened when I was 18 months old. I was late with walking, but nothing else was effected. The surgery left me with scars and a bit of a bump on the side of each hand, which I was told that the doctors told my mother after surgery, that if I didn't like the appearance as I got older, I could have another surgery for the bumps. One isn't that bad but the other is somewhat more obvious... Keeping in mind that surgery has progressed since, I wouldn't say it would be so obvious on a child that went through the surgery today. In one of my hands I can feel a bit of what feels like a bone, where my pinkie used to be. Not attached, it's just in there. Not sure if its actually bone or just something else as a result of the surgery. As for pain, I'm told it didn't seem to bother me much and I was pretty much back to myself right away. Today my only issue is that from time to time if my hands get cold in the winter sometimes I'll get a bit of pain on the sides of my hands. Or if my feet get cold my scars are more reddish purple in color, but that doesn't matter much. I'm considering going through with having surgery to get rid of the remaining bumps on my hand cause I'm a little bit embarrassed by them, and from time to time someone will ask whats wrong with or what's happened to my hands and if I'm okay. I sometimes worry about what if some day I get married, and how married couples always love to get that one photo with the woman's hand over her husbands, showing off their rings and such, and how my hands look. I'd rather not have to look at a photo like that and see a bump on the side of my hand. If anyone else comes across this and has had a second surgery as they got older to rid of any bump, I'd just like to know how it went and such.

Julie - posted on 03/18/2013

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Hi, My daughter is having surgery on both feet and hands this April, I was just wondering if anyone that has gone through the surgery and what was the pain involved?

Cheryl - posted on 02/28/2012

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Hi Shauna,

I was just reading through here and saw your post. I don't know alot about the extra pinkies, but have talked to a couple of adults who have had extra pinkies removed when they were little and to look at them, you'd never even be able to tell. Through all my research about polydactyly I know that the pinkies are the most common, and usually they don't involve bone, so therefore are a little less complicated to remove.

My son was born with an extra thumb on his left hand. He's 2 1/2 now and we're going to have surgery done to remove one of the thumbs in the next couple of weeks. I know how scary it is regardless if it's thumbs, pinkies, or what! I'm so glad for you that you've had all the testing done and everything else seems to be healthy. Our son is healthy otherwise as well...thank god! Anyway, good luck to you with your pregnancy and birth.

If anyone else out there reads this and has had the surgery done, I'd love to hear all about it. Thanks

Shauna - posted on 01/24/2012

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I just found this board and the posts seem so very old so I'm not even sure if I'll receive any replies but I hope so! I'm due May 14th, 2012 and after many ultrasounds it has been confirmed that my son has an extra pinky finger on each hand. Everything else appears to be developing normally, from his brain, internal organs, growth. After the 18 week ultrasound showed 'possible' extra digits I had a quad screen and everything came back negative and at the best possible levels. We saw a genetic counselor and had a detailed ultrasound at 22 weeks and they confirmed the extra digits. We declined amniocentesis due to the risk of M/C and due to the fact that everything else appears normal. We have another ultrasound at 27 weeks as they want to see how things are progressing.



We have no genetic history of polydactyly in either of our blood lines, and the extra testing was to rule out some serious birth defects that are often associated with extra digits.



For a condition that seems to be fairly common, I'm surprised how hard it has been finding other Mom's in our situation. Although everything seems to be progressing normally I can't help but be worried about the future and if there are going to be other issues that we should prepare for, or if he'll be 'normal' otherwise.

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we told her why she had it. she just laughs and thinks its funny. thanks hes such a good baby too.

Carrie - posted on 05/14/2009

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We are home and Anthony's hand looks GREAT!!!!!!! Can't believe how beautiful it looks!! We kept his cast, it's so tiny and cute. Did you tell your daughter why she had it?? Or are you waiting? BTW, your baby is soooo precious!!!

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congrats on cast removal, its going to look perfect. and trust me you'll never forget what it used to look like either. well enjoy the day tomarrow with a cast free Anthony. are you going to keep the cast? we did actualy i just showed it to my daughter the other day she didnt believe me that she had it on her as a baby.

Carrie - posted on 05/13/2009

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Anthony is getting his cast off TOMORROW!!!!!!! First thing in the morning!!! I am a little nervous, but very excited for him!! : )

[deleted account]

thanks, I hope you had a woundeful mothers day as well. yeah enjoy the removal of the cast. he'll be so happy to have his arm back.

Carrie - posted on 05/10/2009

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Well, hope you guys had a wonderful Mother's day!!!!! Anthony gets his cast off already this thurs!!! 4 wks went by fast!!! We will see, can't wait!!!!!!

[deleted account]

im glad to hear everything went well. and your lucky he didny need the pin. i wanted to pass out when the went to pull it outta rayne cause it looked like it was a foot long. but it was a good 3 in.



nursing is going great, his jaundice is almost gone and hes doing great.



have fun with your little guy and watch out for the cast. its a nice weapon if there mad.

Carrie - posted on 04/23/2009

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Well Anthony's surgery went very well!!!!! He has a full arm cast and he didn't end up needing the pin in his thumb after all!!! We went to the zoo Friday after his surgery inspite of what the nurse said....It was a beautiful warm spring day and our Anthony would never have rested if we sat home (because he would have wanted to play w/big brother) so...because they said to make sure he rested, we pushed him in the stroller which is soooo relaxing for babies. He rested the whole time in the stroller and fresh air. When we got home he wanted to play with Nicholas and the very next day he was crawling, climbing and acting his old silly self!!!!!! He doesn't seems to notice the cast at all. The only thing he got frustrated with was the juice cup, we have to give him the ones with the handles because he can't pick the regular ones up right now. His cast will come off in 3-4 weeks and I am a little nervous how the turnout will be. I know I miss his little thumb and when I see that it is really gone for the first time I know I will cry.



Congrats on Zaiden, Kelli!! So sorry to hear that everyone went through such an aweful ordeal : ( Glad to hear he is doing better now...is he nursing now?? I know it is sad for us mommy's....I stop nursing Anthony soon...it is a bittersweet thing when you stop. You must be devestated he isn't taking. It's ok though...you work through it. Hope all is well!!!!

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well get lots of sleep tonight your going to need it.



Zaiden was born friday April 10 8lbs 6oz 21 in. we had a very scary start his cord broke beofre he was completly born. it was wrapped aound his neck and broke when the Dr tried to un wrap it. he lost a little blood and had a collapsed lung as well. he only had to spend his first day in the NICU. he now had jaundice and doesnt was to eat and only sleep. wich is very frustrating when nursing. I have to pump and bottle feed he just wont take to me right now. it makes me sad.



but good luck tomarrow. you guys will be fine. but like I said try and get as much sleep tonight as possiable. It will be over before you know it.

Carrie - posted on 04/16/2009

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Congrats!!!!!   Hope baby is healthy and everything went wel!!!  Hope you are ok with your fall and all.....



We will be bringing our little guy in first thing tomorrow morning...6:30 am.  He is the very first.  I know it will all go well, just sad.  I made a garden stone with his handprints this week, that my other little guy Nicholas helped decorate.  It came out really cute, with extra thumb and everything!!!  Well, I will keep you both posted on how things went!!

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Baby will be here friday. Im being induced i was 3 cm and 90% last friday so were inducing because they think hes going to be huge and we would like to avoid a c-section, and I fell lst night and tore a ligament in my ankle so babys kinda stressed due to my pain and I fell on my stomach when i happened and were just playing it safe.



 



I hope you get all your questions answered and you feel relief from it. we never got to talk to anyone other then the surgen him self and we had no clue as to what was going on,, so im glad you get to meet with everyone. it should help with the process.



 



have fun with the ester egg hunt. we getta miss all that but my mother in law will be taking our daughter to one. we should be home from the hospital easter morning so we can have a nice holiday as a new family together.

Carrie - posted on 04/08/2009

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Did you have the baby yet Kelli???  Or are you still set for the 17th?!!  We go tomorrow to meet with all the people that will be with our little guy during his surgery.   We get to meet each person and ask any ques we may have.  Then the surgery is still scheduled for next week.  Could have done it this Friday, but then he would have had a hard time doing the Easter Egg Hunt with the family!!!



How is Harri doing, Deb????   Is he doing much better with those seizures???  I hope so!!! 



I wish you both good luck with your families and have wonderful holidays!!!!

Deborah - posted on 03/13/2009

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oh good luck both of you,

im already sick with worry, and we dont even have a date!!!

i'll be thinkin of you both!

x

[deleted account]

thats my due date with our little guy!!! ill be t hinking about you guys when im delivering my little Zaiden, and i'll count his fingers and toes in Anthony's and our other littles ones honor. lol you'll be fine, its way harder on us parents then is is the little guys. you'll be ok and his hand will looks just as perfect afterwards as it did before just a little different. good luck.

Carrie - posted on 03/13/2009

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Hope all is well ladies!!!  We scheduled Anthony's surgery for April 17th!  Not looking forward to it, but I know all will be ok right?!!!  *sniff*

[deleted account]

oh im so sorry to hear about that. that would be so scary. Rayne had a couple fever sezures when she was a baby and that was bad enough. I hope tomarrow is a better day for you.



 



Wish you the best   

Deborah - posted on 03/02/2009

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thankyou,

ive just made a peads app for 12.15 today, Harri has had 2 massive seizures in the last 12 hrs...( i dont think i mentioned he is on epilim for epilepsy,)

ive spent the morning in tears, absoluteley panic stricken!

i just dont know what to do, the epilim has stopped one kind of seizure, but now he's having others, he just "passes out" goes limp in my arms, blue/violet in the face, eyes roll back, im terrified its causing some sort of damage to his brain.



i hope he's not a biter too,



man, what a day this ones gonna be!

[deleted account]

I hope everything goes well with meeting the surgen tomarrow. and good luck with the teeth. hopefully hes not a biter.

Deborah - posted on 03/02/2009

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omg, how amazing to have twins & both of them have extras! man that mum wouldve been twice as shocked!!!

it took about a month to get used to them, i was so scared they would catch on his clothes as i was changing him, all his newborn pics, he has socks on his hands, and for the first month i kept mittens on him!!!

my 7yr old, Grady, kept asking if he could just pull them off, i was a bit concerned he might try!



we have an app at the childrens hospital tomorrow afternoon, its only to meet the surgeon and ask any questions i have, but im already feeling sick in the stomach!

i dont think Harri will need casts, maybe just bandaging, he has no bone in either attatchment, you can see in the pic i posted how they just dangle on the side of his hand.



on a completely different subject, harri cut both his bottom teeth yesterday!!!

well, its 7am here, i must go get my big boyz out of bed and start the school day!

Carrie - posted on 03/02/2009

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Anthony is getting a pin also but they didn't say anything about breaking his thumb...they did say that the kids who are old enough to talk say that it isn't so painful afterwards and that they only needed the pain medicine maybe twice after and that was it.  We are supposed to have a meeting before the actual surgery to meet everyone who will be with him during the procedure.  They will let us know how everything will play out.  The doctor told us her part but she said they will give us a better idea about it all.  I know it will take about an hour for the surgery...two total with the prep and everything.  We are going to do it in mid April.  His birthday is May 26th so we thought that would give him enough time to heal since he will be in the cast for 3 weeks.  We wanted him to have a nice birthday and to be able to go in the pool.  We also thought if we waited till after he would be too hot in his cast.  They said we can do it anytime and just to let them know when.  Guess we will see...I a just sad I will be away from him for 2 hours...I am breastfeeding him so it will be the longest I have ben away from him...actually I take my kids everywhere so I am never away from him.it will be very hard

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that would be cool. Before we had Raynes thumb done i never even thought about the hand prints, plaster, i didnt even get and close up pics of it. I wish I really would have done something to give her and keep my self as keepsakes, but I do have the cast and splint though. I wanted to keep the pin they had in her thumb too but they suggested against it. since they had to break and rebuild the bone she had like a 3 inch pin in her thumb as well.

Carrie - posted on 03/02/2009

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HAHAHA the doctor already warned us that Anthony would learn real quick that he can use his cast as a weapon!!  Funny that as small as they are they are so smart!  I have thought about keeping his little thumb too!!  One of our pediatricians had the same little thumb as Anthony so when she heard she came to the hospital to see him and was smiling.  She made us feel so good about it.  Actually all the doctors and nurses kept telling us about all the different babies that had the same.  The week before Anthony was born a set of twins were born both w/ extra pinkies.  I am going to do a plaster mold of his hand...i am o sad that this has to be done.

Deborah - posted on 03/02/2009

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hahahaha, im loving this! others who understand!!!

our surgery has been put off till may, i wish i could leave them on,

carrie, have you thought of making a plaster mold of your babys hand? i did one of me holding Harri's hand, it turned out absolutely brilliant, an awesome memory for me & him.

ive even thought about keeping them in a jar once they're removed, i really dont know if i can bear to be parted from them!!! my mum says im sick, but i kept belly button pegs from the birth, so i dont see how this is different!



isnt it funny how no-one even notices them!!! i always show people before they notice too, after the shock wore off, i became so amazed by them, now im proud of his extras!

i think im going to miss them when theyre gone.



admittedly, it is only his paternal grandmother who is ashamed/embarresed by him, but thats her problem to deal with, not mine,

it does hurt my partner, his own mother wont acknowledge or hold his son!



but all my other kids dont bat an eyelid, Jaxon is 2, he loves to play with them, he even looks at his own hands, touching his fingers where harri's extras are, you can see his little mind ticking over wondering where his extras are! its so cute.



thankyou to both of you, i cant express my happiness enough, but im sure you understand!

xxx

[deleted account]

Yeah I ,loved my daughters thumb too. we always joke about it happening because me and my husband and huge video gamers. want we joked about leaving the extra thumb as an advantage to her with video games later in life. yeah we were shocked when talking to the surgen about how common of a birth defect this is. they said its also possiable hereditary (cant spell) so when our son is born we will be counting fingers and toes. and watch out for that cast, I had some bruses from getting wacked by it. I swear it weighed as much as she did. well good luck to you and your son with surgery, I hope it turns out as beautifuly as Raynes did.

Carrie - posted on 03/01/2009

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Oh I am sooo excited I finally got responses!!!  LOL!! My little guy will be goingthrough w/ his surgery in April.  We wouldn't do it except for the teasing when hes older aso.  My husband saw his thumb first and the nurses and doctor just shook it off and said it was nothing they see it a the time.  So, the surgeon said Anthony will be in a full arm cast also.  I love his little thumb and get choked up when I think about them taking it off.  No one really even notices it.  I try and point it out first so if someone sees it they don't feel awkward and uncomfortable.  Good luck Deb and Kelli your daughters pics look great!!  Anytime I watch the Princess Bride I will watch in a new light!!!

[deleted account]

Yes surgery was very hard for us. i understand all the feelings your going through. we too took the 10 fingers and toes for granted, my mother in law jokingly counter her toes but never her fingers. no one not even all the nurses and dr's noticed her extra thumb, she always kept in sucked in with that hand in a fist all the time. I noticed it when we were getting ready to leave the hospital my heart stopped, then I kinda laughed thinking I was seeing things then I counted it again and i lost it. my husband went out and told the nurse and she didnt believe us she started laughing and asked if we were ready to leave. then im like NO LOOK AT MY DAUGHTERS HAND. I didnt even get an appoligy just a heres a number to a local surgen. how nice of the hospital. but anyways, we were very concerned of her surgery because had a full thumb bone and all. the bottom joints bone was doubled then the top joint was 2 seperate and movable. she could control the movement of both top parts was pretty cool now that I think about it. but like I said before you'd never tell the difference unless you seen her thumb close up with the scar and its a little deformed but still perfect to us.



 



I think the thing that upset us the most was post surgery becausse she had a full arm cast and the stares and comments we got from the public was discusting.eople actualy thought we abused her and broke her arm or something, i mean honestly if I abused my child she wouldnt be in my arms people. so be prepaired for alot of comments and nasty stares. but I loved telling people who were actualy interested in that was truely going on. we kelpt her little cast and the splints she wore afterwards for her because we dont have pics of pre surgery but we do have pics of her with the cast and post surgery. I thought it would be a good keepsake for her.



 



Anyways now im rambling on. take care and good luck with your little guy

Deborah - posted on 02/28/2009

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wow , first of all, thats so sad about your twins, you must have been terrified sending her for surgery, you poor thing going hrough that.

our paedeatrician said its the most common birth defect world wide, affecting around 1 in 200 births, about 90% are treated at birth though.

Harri is my 5th son, and i never ever counted fingers or toes, not with any of them, i just took forgranted that they would have 5.

i had never even heard of this, had no idea, i guess you can say i was naive...

anyway, when harri was about an hour old, my mum put her finger in his hand, and his extra "fell out" (they were tucked neatly under his pinky, hidden inside his hand) my mum gasped and said he's got an extra finger...

man! my heart sunk, the room started to spin, and everything seemed to go sooo slow, my partner went to get the midwife, and i panicked, i was convinced something was very very wrong!

the midwife had read about this, but had never seen it before,she was amazed, while i was terrified!

my doctor assured me that its minor, and he is fine, but i was still scared!

after my mum went home, she stumbled across a program on pay tv called "one too many" which was all about this, she taped it for me so i could see and hear all the info about polydactyly.

when harri was 1 week old, i noticed he has a tongue tie as well, they will correct this when they do his fingers... i suddenly understood why he was a fussy eater...

then i noticed he was having seizures,

Harri is now 6mths old, he is taking epilim to control the seizures, has just learnt to crawl, and he is desperate to be running around with his big brothers!

He is such a happy baby,



however, i, am terrified of the surgery, as there is no bone, it should be a simple procedure, its the G/A that worries me, and pain after, will he miss his fingers, because im sure i will... will he get phantom feelings, like amputee's???



omg, so many questions!!! sorry to ramble on & on, just great to find other mums who understand!

massive kisses and cuddles to you and your daughter!



and of course to carrie and her son,

[deleted account]

My daughter was born with an extra thumb. it was doubled at the bottom joint and she had double of the top. it kinda looked like a pincher. I dont really have any pics of it. i never had a camera when she was born but I can post pics of what her thumb looks like today. her surgen did a wounderful job. you could never even tell unless you really take a look at her thumb that anything was ever wrong with it. theres a nice zig zag scar that she has from it its not sloppy looking or nothing. i was very pleased with her results. but surgery was very scary. she was my first living born child. she had twin brothers I lost a year before she was born. so that made it even harder on my for her to go through this. this was on her right hand. i thought for sure shed be left handed like me but she right handed. if you have any questions feel free to ask me.

Deborah - posted on 02/28/2009

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OMG!!!! my son was born Aug 08 with an extra pinky on each hand!!!

im so glad i found you, i just typed polydactyly in on an offchance, expecting nothing to come up!

our surgery has been put off 3 times now, much to my frustration!

imin 2 minds, half of me wants to keep them on, as they are just a part of my beautiful baby!!! but the other half is concerned about teasing as he gets older.

Harri has no bone in the attatchments, butt they do have nerves and blood supply.



I must admit, i was very scared when i found them after his birth, but seriously, how precious and cute are they!!!

i soon got over the shock.



people react differently too, mostly we've had positive reactions about harri being blessed with extrs, but some people react like he is not "normal"

even his paternal grandmother refuses to acknowledge him, the cow!!!



i love harri's "spares" i have taken handprints, photos, even plaster molded his little hands!!!

i have published harris story in thats life magazine and our local paper,

and i adore playing this little piggy with him!!!

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