New here- child with ABS

iVillage Member
Registered: 12-09-2005
New here- child with ABS
8
Wed, 02-22-2006 - 8:52am

Hello!

My son has amniotic band syndrome and I was just wondering if anyone else on here has a child with that condition.

iVillage Member
Registered: 03-19-2003
Wed, 02-22-2006 - 9:54pm
Hi and Welcome to the board, we're happy you dropped in...how old is your son?

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iVillage Member
Registered: 12-09-2005
Wed, 02-22-2006 - 11:08pm
He is six years old this month.
iVillage Member
Registered: 03-19-2003
Thu, 02-23-2006 - 8:14am

I'm not sure how many other moms have children affected by ABS, but it is possible that you do have many things in common, such as accommodations, mobility issues, IEP's and more.

 


 



iVillage Member
Registered: 12-09-2005
Thu, 02-23-2006 - 1:55pm

It is a very mild case of ABS which only affected one of his hands. The hand is deformed as well as the fingers but the hand is fully functional. He can even button his shirts now (I was worried about that one!) but I still tend to buy as many pants and shorts with elastic waistbands, and shoes with velcro intead of shoelaces. Obviously, he will never play piano but then again, he might not have done that anyway. I think that it actually bothers me more than him but I noticed him keeping his hands in his pockets during his Christmas school play as if he was trying to hide his hands, plus someone in his Sunday school class ridiculed him for having such a "tiny hand".

The child who ridiculed him is acutally one of my son's good friends from church and so I think that he is now on guard all of the time since the cruel remark came from a trusted friend rather than someone who does not know him.

I realize that things could be a whole lot worse than they are. I think back to when he was in physical therapy as a baby and I saw children coming in and out of the office and they all seemed to be much worse off (missing hands, feet, legs, or arms) and I felt bad for feeling as bad as I did for my son as though I did not have a right to but still... I guess that I am just a bit down about the situation and worry about how things will be when he gets older. And the cruel remark still has me upset. I think that my son might have a thicker "skin" than I do!

Realizing that the cruelty mostly comes from ignorance, I have been thinking about writing an educational book about ABS. I know that I had never even heard of the condition until my son was born and I think that it is a condition of which most know little or nothing unless/until they are touched by it.

Just rambling right now, apparently. But there you have it.

iVillage Member
Registered: 03-19-2003
Fri, 02-24-2006 - 7:24am

Thanks for sharing your story.

 


 



iVillage Member
Registered: 03-27-2005
Wed, 03-08-2006 - 11:41pm

Hello,
My son was also affected by ABS. He will be 1 year old this Saturday, March 11. William (DS) has both hands affected, he had his first surgery February 22 to have his fingers seperated and they had to amputate one of them. He gets his cast off in the morning YIPEEE. It is hard to describe how his fingers looked but I will try. He has both of his thumbs, they were not affected. On his right hand the first three fingers were fused together at the top and all four fingers were amputated at the tips. On his left hand his pinky was unaffected but the other three were really jumbled up, the first finger(the one that was amputated during surgery and used for skin grafts) was almost completly amputated at birth, it was connected to his middle finger by a piece of skin and the first three fingers were fused together at the first knuckle by his palm and the other 2 fingers are severly underdeveloped from that knuckle up. The doctors actually said that they are not sure if the middle finger will have enough blood supply to survive, and right now there is a horrid smell coming from his cast on his left hand, so I just pray that it made it and pray that the skin grafts took. We will find out more in the morning when they remove his cast.
Sorry this was so long. I am just happy to know that there is another mother on here that has gone thru what I am going thru now. I look forward to talking to you and getting to know you.

Katrina

 

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iVillage Member
Registered: 03-19-2003
Thu, 03-09-2006 - 10:51am

Katrina, welcome to the board...thanks for sharing your story and we too hope that the graft took.

 


 



iVillage Member
Registered: 12-09-2005
Tue, 04-18-2006 - 3:23pm

Hi Katrina!

I have not been visiting the board for awhile and just read your post! Welcome to the board and it is nice to hear from someone in a similar situation.

So how is William doing? How was everything when the cast was removed? I hope that it went well. Your children are beautiful or I guess I should say handsome since they are all boys!

I tried to email you but you are not set up to receive emails.

Hope to hear from you!