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Author Topic: Missing Digits and Ectrodactyly  (Read 3040 times)
Julia Craven
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Missing Digits and Ectrodactyly
« on: March 24, 2011, 11:03:43 PM »

We received a referral for a precious child who is missing the three middle digits on one hand.  It looks as if the condition is called ectrodactyly.  I was wondering if anyone has adopted a child with missing digits.  I am primarily concerned about genetic syndromes that go along with missing digits. Does anyone have any insight on this special need?  Has anyone adopted a child with ectrodactyly?
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dx2
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Re: Missing Digits and Ectrodactyly
« Reply #1 on: March 25, 2011, 06:10:53 AM »

My daughter is missing her middle digit on her right hand and has syndactyly and both hands.  She has been diagnosed with cleft hand and the syndactyly.  We have also found out recently that she has a genetic syndrome called ectodermal dysplasia.  We knew before we brought her home last year that there was more going on (she also has light brown very thin hair, eczema, etc).
Her syndrome looks to be very manageable, she will also need lots of dental work but we are very lucky to have dental coverage. 

Have you joined the yahoo group adopting children with limb differences?  It was very helpful for me when we first received my daughter's referral.

Dayna
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mikeandmare
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Re: Missing Digits and Ectrodactyly
« Reply #2 on: March 25, 2011, 07:18:47 AM »

Hi...we are currently waiting for our LOA for a little girl who is missing the tops of her middle and ring finger on her right hand and not sure what is going on with the left buy was told it was syndactyly as well.  She seems to have her thumb, pointer finger, and pinky of each hand. Our IA's opinion was that our daughter's is related to ABS (amniotic banding syndrome).  I am curious to see your responses.
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Maryann
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chrisnstefanie
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Re: Missing Digits and Ectrodactyly
« Reply #3 on: March 25, 2011, 07:23:14 AM »

Our little one is missing some fingers on her left hand. She has a condition called symbrachydactyly. It affects the left side only and is different from ectrodactyly and amniotic banding. From the research we've done on her need, it only involves the left side, sometimes just partially missing digits all the way to partially missing arm, and nothing else. No syndromes associated with it, just seems that the left side didn't form when the child is in utero. Our pediatrician happens to have 2 people in her practice with this need and they require no intervention whatsoever, and are otherwise totally healthy!

Here is a good link for this need: http://www.childrenshospital.org/az/Site1108/mainpageS1108P0.html

And from the pictures and our daughter's medicals, it seems that there isn't much she cannot do. We can't wait to bring her home Smiley Hope you are able to find the answers you're looking for to make your decision!

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Re: Missing Digits and Ectrodactyly
« Reply #4 on: March 25, 2011, 07:26:29 AM »

My daughter's best friend in the SWI has this.  He just has the two fingers....thumb and pinkie.  He can still use a that hand to hold a pencil and write.  He seems so normal and neat......I have been advocating for him for a while, so if anyone is interested in a 5 year old on an agency list, let me know.
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shellyyrk
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Re: Missing Digits and Ectrodactyly
« Reply #5 on: March 25, 2011, 07:50:04 AM »

Our child had bonus digits---12 fingers, 12 toes.  We see a genetics doctor, but no syndrome has been defined.

When a child comes home with digit issues, you may want to ask what other areas form in the womb at same time and have those checked out. Our child with extra digits also has an ear issue (microtia) so the doc also checks her kidneys annually.

Kids with missing digits are just amazingly capable.  Our next child has 4 fingers.

Shell
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shellyyrk
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Re: Missing Digits and Ectrodactyly
« Reply #6 on: March 25, 2011, 07:52:23 AM »

My daughter's best friend in the SWI has this.  He just has the two fingers....thumb and pinkie.  He can still use a that hand to hold a pencil and write.  He seems so normal and neat......I have been advocating for him for a while, so if anyone is interested in a 5 year old on an agency list, let me know.

This little man she is advocating for is ALSO our son's dear friend.  He is 5 and is so capable and darling.  I send my hopes that a family will discover this dear boy SOON.

Shelly
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misscourtneyk
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Re: Missing Digits and Ectrodactyly
« Reply #7 on: March 25, 2011, 09:48:28 AM »

We just arrived home from China with our little Joshua..........he has no fingers on his left hand, and only two fingers on his right hand. Doesn't slow him down a BIT! We believe this is due to ABS (Amniotic Banding).
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Julia Craven
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Re: Missing Digits and Ectrodactyly
« Reply #8 on: March 25, 2011, 10:49:13 AM »

All of this information has been very helpful.  I had not previously done much research on missing digits since we had requested a child with club foot.  I have just joined the yahoo group associated with limb differences.  We have until Sunday morning to make a final decision.  She sure is a cutie! 
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amazeingteacher
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Re: Missing Digits and Ectrodactyly
« Reply #9 on: March 25, 2011, 11:04:26 AM »

you will get tons of infomation as you research more and more.  my daughter came home in may of 2010 and is now 2.5 years old.  she has both finger and toe deformities caused by amniotic banding.  she had one surgery in july of 2010 to separate some fingers and toes.  and recovered wonderfully.  it doesn't stop her from doing anything...in fact she's much more independent than i'd like her to be! ha!! 

on her right hand she only hand her thumb and pinter finger...missing 3
on her left hand she has all 4 however, one is "short"
on her rihgt foot her frist 2 toes are short and
on her left foot she is missing her first 2 toes

she is supposed to wear braces on her feet each day, but sometimes we don't.  it will help to correct her walk b/c she turns her feet inward to compensate for the missing toes.  she's amazing!  good luck on your research and decision making!!
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Re: Missing Digits and Ectrodactyly
« Reply #10 on: March 25, 2011, 02:45:52 PM »

Our son had syndactyly of 2 of his fingers and shortening of the fingers as well and he was missing 4 toes per foot.  In his case it is not genetic, we had him tested but there are signs of amiotic banding and we strongly believe that is what cased the toes to be missing and one hand smaller.  He does just fine and wears prosthetics.  I think the only way to know about the genetics is to actually have the child tested.  Good luck!!!
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dx2
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Re: Missing Digits and Ectrodactyly
« Reply #11 on: March 25, 2011, 03:20:19 PM »

I should have also said that, like everyone else mentioned, my daughter's missing digit and syndactyly does not affect her at all.  The physio therapist we saw when we first came home commented on how great her dexterity is!  She is full of energy and a very curious, lovable little girl. 

Good luck with your decision.
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dd1 Jiangxi 2006
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hopingfor08
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Re: Missing Digits and Ectrodactyly
« Reply #12 on: March 25, 2011, 04:44:46 PM »

Hi, I just wanted to comment on the genetic syndromes portion of your post. I don't have any children with missing digits, but I have two who were born with multiple mid-line defects (heart and cl/cp). I have researched and learned A LOT as we go about genetic syndromes and just wanted to say that many people who are born with birth defects have a genetic syndrome and don't even know it. I know people's biggest worry is intellect when they think of a syndrome, but please be aware that many genetic syndromes do NOT affect intellectual abilities. Having said that, I applaud you for asking the question b/c many people never even consider this as a possible cause and it is a possible cause of missing digits though I have no idea how prevalent and/or rare. Not sure this helps, but just wanted to share what I've learned. And lastly, I hope you can find your way to a peace-filled decision.
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Julia Craven
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Re: Missing Digits and Ectrodactyly
« Reply #13 on: March 26, 2011, 10:00:11 PM »

I would like to thank everyone who responded to my questions about missing digits.  It is with much excitement that we have decided to accept the referral.  When I figure out how to post pictures I will pass them along!! It has been a long four years of waiting (we started our paperchase for NSN in early 2007), but she is worth the wait.   
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grtlyblesd
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Re: Missing Digits and Ectrodactyly
« Reply #14 on: March 26, 2011, 10:29:59 PM »

Congratulations on your new daughter!   

She will amaze you with what she can do.  My daughter has one "hand" (about where an elbow would be) with two fused fingers and a "locked" thumb.  When we were in GZ, I let her hold a juice box on the way from 7-11 to our hotel room.  She had the straw open and inserted before we'd gone 2 blocks!  I learned really quick not to assume that she couldn't do ANYTHING she put her mind to. 
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Shecki
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junebugmama
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Re: Missing Digits and Ectrodactyly
« Reply #15 on: March 26, 2011, 10:40:58 PM »

Congratulations!!! We started paperchasing in spring 2007 for the NSN program too. Have been home with our SN daughter for a little over a year. BEST decision we ever made was to switch programs. Excited for you and what lies ahead.
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dx2
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Re: Missing Digits and Ectrodactyly
« Reply #16 on: March 27, 2011, 07:39:24 PM »

Congratulations! 
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dd1 Jiangxi 2006
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Re: Missing Digits and Ectrodactyly
« Reply #17 on: March 27, 2011, 08:51:51 PM »

Yeah!  I am so excited for you....I love seeing all these precious children find their families!
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shellyyrk
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Re: Missing Digits and Ectrodactyly
« Reply #18 on: April 05, 2011, 05:24:23 AM »

Congratulations on your daughter.
Keep us all posted, when you can.

Shelly (hoping to travel in early May)
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room4more
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Re: Missing Digits and Ectrodactyly
« Reply #19 on: April 05, 2011, 03:48:42 PM »

Congratulations to you!!  Our daughter has a small right hand and although she has all five digits, she is missing joints in her fingers.  She also has syndactyl.  She was recently diagnosed with a rare syndrome called Poland's Syndrome.  Poland's does not affect intellectual development, but it can affect other organs in the body.  We are on a medical journey we did not necessarily anticipate, but we are 100% committed to.  Our daughter is the light of our lives.  She is a spitfire and there is nothing that she can not do at this point in her life.  Knowing what we know today, would we do it all again?  Absolutely, syndrome or no syndrome, our daughter is amazing and we are so very blessed to be her parents!   
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