any ladies out there with children who have polydactyly

[nilllabean26]

I'm 22 weeks preg and just foujd out my little boy has it. He has an extra digit outside of the pinky on both hands.

How did u guys handle it. Did u get them removed or didnuballow your child to keep the extra digits.

Wats ur opinion on removal.


And what did ur doc say to u about genetics.


In need of some more ppl going through this and sharing stories. Also. Did ur child have any other health problems along with it?

 

[sequeena]

Is it a fully formed digit?

My son had polydactyly on his right hand - his thumb. It was a fleshy stump with a claw for a nail. No bone. It was removed at 15 weeks old. He had further surgery at 2 years old as he was left with a hypoplastic thumb. We still have issues with it (his thumb gets trapped over his knuckles) but it's not massive issues.

 

[sequeena]

My son does have a whole range of issues they may be part of a genetic disorder which he is going to be tested for. Does polydactyly or webbed feet run in yours or your partners family?

It may just be a random mutation.

Its completely up to you if you want to remove we did it for safety reasons.

 

[nilllabean26]

No. No one in my faaily(very big family) and none in hubby's.

I don't know. They didn't show me. Just told me. And I couldn't see it in this blurry image they were speaking about. It's outside of the pinky and she said she didn't know if it had a bone or anything. I shut down ANd didn't ask any pertinent questions. I will ask y regular ob next appointment more detailed questions.

After she blamed me even after I told her it doesn't run in my family, she told me that She's sure it does. It hurt my feelings a lot.


Anywho. Thanks for sharing. Sorry ur son has more issues. I read somewhere that when they tie it off, it causes more problems and they need reconstructive surgery to correct the bad job the tying off did.


Does it run in your family? And what other issues?


I Also read that it can lead to other disorders with mental disabilities. Does ur son suffer from any mental disabilities?

Sorry for so many questions.

My hubby has Also shut down a tiny bit and hasn't looked it up or learned anything because he feels scared I guess. Need to be strong for myself and my baby. I want to love home regardless of anything and not be scared of the unknown

 

[nilllabean26]

I just read ur signature. U have a strong little boy there. And u must be a strong mommy: )

 

[annanouska]

she blamed you?!

I dont have any experience of this but do have a son with additional needs. I know this is so easy said but please try and just keep calm and enjoy your pregnancy. Extra stres and worrying is dangerous to a pregnant lady as im sure you know

The thing is it's hard to know what will be the case. It may just be an extra digit and that's that it could be part of a genetic condition but even then you may have a son mildly or severely affected. I spent a lot of time very upset over my son, it turned out for now things aren't so bad really.

My friends granddaughter had slight webbing to feet and an extra toe on each plus an extra finger. The finger and webbing was dealt with at birth and the toes are currently left as she was walking at 9 mo so didn't want to hinder her movement and causing no issues atm. She has no intellectual delay or physical impairments you honestly wouldn't know any different.

I don't think anyone wants their children to be different but you can still love them just the same and enjoy a great time together. It does take some getting. Used to and it's not alwyqs easy. Wait and see what happens when your boy is here x

 

[nilllabean26]

Ty Anna. I appreciate ur words

Yes she did not look At my husband once and said she was sure it was die to someone in my family. He's of a different race than me .

Oh well. I'm doing my best to enjoy. From day one though I have struggled with attaching and bonding with this baby. For over a month, they told me I would miscarry. For over 3 months, they told me my blood pressure was rocket high and didn't put me on meds until I changed hospitals. But I've been Oh fear way too much this pregnancy and I do feel my stress and sadness will affect the baby negatively. I do my best to stay positive and that in itself has been a bit of a struggle.

 

[sequeena]

I hope you don't mind me asking but are you coloured? I only ask because I think polydactyly is seen more in coloured people than white but it shouldn't mean anything as my partner and I are white and our son was born with polydactyly. That stupid woman I'm so mad that she blamed you as if you or your partner can help what's in your genes (and it may just be a random mutation! )

Thank you he's a super star we really do think our sons polydactyly and other issues is part of a genetic syndrome but it's taking so long to find out.

Honestly polydactyly is not to be afraid of. We didn't find out until our son was born and I didn't care at all. I actually still miss his extra thumb! It did take me longer to come to terms with his other disabilities and I still have days where I struggle but every problem he has is a part of him and we love all of him.

As for the corrective surgery sadly he would have needed it anyway. Because 2 thumbs grew the 'proper' thumb didn't grow as it should have so it needed sorting anyway. He will however have life long problems with it.

My nanna said my father has webbed toes - he also has learning disabilities so I think whatever this is my son got it from him (and probably me to an extent though I think whatever it is I am just a carrier).

This was my son's thumb.

https://i798.photobucket.com/albums/yy267/sequeena1/Mobile%20Uploads/Screenshot_2015-01-07-20-58-23.png

 

[annanouska]

I'm one of life's great worriers and pregnancy was no exception. Honestly I worrièd all through it...I started spotting at 6 weeks and continued until about 12. At 13 weeks I had a large bleed for two days, the little monitor showed him waving at us I then went on to have aches and pains, a baby who honestly rarely moved so got monitored often. It wash horrible, I wish I didn't worry like that but I wanted him safe so badly I couslnt help it. The birth all went wrong too but strangely I didn't worry as much then

I don't think I bonded brilliantly with him when pregnant I wasn't one of these belly stroking singing pregnant women. I found it seriously hard to bond when he was tiny, possibly as I was in so much discomfort from the labour problems maybe a touch of PND I dunno but it's all fine now. I don't think he has been traumatised by the bonding and stress, I used to blame myself that he hated people so much due to the struggles bonding but it's silly. He plays tickle and climbing and other stupid things with us so he's not bothered, just doesn't like new people

If you are finding. It hard maybe chat to your mw as you may be in a higher risk group for pnd.

It's still terrible how you got blamed for it and completely inaccurate! X

 

[nilllabean26]

Lol at asking if I was colored. Haven't ever heard that before. (Only in films from segregation times and before out here in America) but to answer ur question I am.


Well my husband finally asked his mom and it turns out one of his aunts had an extra toe. So much for the doctors avoiding asking him anything.

Ty for sharing the pic and Ty for sharing ur stories ladies.

 

[sequeena]

Sorry! I wasn't sure of the correct way to ask.

Oh I'm glad you found out the reason fingers crossed it it is just a genetic abnormality and doesn't lead to anything else

 

[nilllabean26]

Sorry! I wasn't sure of the correct way to ask.

Oh I'm glad you found out the reason fingers crossed it it is just a genetic abnormality and doesn't lead to anything else

i was wrong. his aunt actually has brachydactly not polydactyly. i have an appointment tomorrow and ty... i hope it doesnt lead to anything else as well. It seems the concerns ive had about his features were ignored past few ultrasounds so I would like them to do a better job than theyve been doing.