Amniotic Bands Syndrome

Tarryn - posted on 10/18/2009

Hi there, my name is Tarryn. I live in Durban South Africa. My youngest daughter Erin (19 months) was also affected by amniotic band syndrome. She also has a below the knee amputation on her left leg and also walks and runs around with her prosthetic limb.
She has a band on her ring finger and middle+baby toe on her right foot. We had the tip of her right toe amputated at 5 months as she was born with the band still on it. It grew larger than her big toe.
To make matters worse she was also born at 28 weeks due to complications with the placenta.
The doctors put it down to us loosing her twin between 8/12 weeks and this damaging her amniotic sac.
I have a constant worry as the skin on her amputated leg fused to the bone so there is a possibility she will need some sort of reconstruction in the near future.
It is very trying and often heart breaking as a mom. I find other children easier to deal with than adults. I always get the question..... what did you do wrong or take during the pregnancy to cause this.

Penny - posted on 09/29/2009

Desi,

Hi. I just joined the group and your posting caught my eye right away. My child has some different birth defects BUT I, myself wasa born with amniotic band syndrome but not to the extent that your Saarrisha has been born with. I am a 45 year old and the bands effected my left hand which all i have is a "nub" with little growths where there would be fingers. I fortunatly did NOT have any prosthetics at all. . I had to learn my own way of doing anything...... alot of struggles but @ some point I do get it figured out. When I was working they was all amazed that I actually typed alot quicker than some of them who had the full set. I don't know how this will help you but just wanted to let you know as I am a victim of ABS ...... anything she wans to do ...... she will be able to complete. My youngest daughter was born with a "neonatal infarction" which is she had a stroke @ birth and thats how I found out what happened tome when I had to take her to see neurosurgeon. If there is anything you would like to ask by all means feel free to. I wish you lots of luck. My heart and prayersgo out to you and Sarrisha



Penny L

Danielle - posted on 07/13/2009

Hi Desi My name is Danielle I am from Mass USA. My son is 5 years old and he has a congenital amputation of his left leg. We are on our 5th Prosthetic that is actually being made as we speak. We did have a clubbed foot at birth but that was take care of in the first couple of months if his life.It has been a rough road for our family. and it gets harder as he gets older because he does notice that he is different from everyone else. We just got the option today to get a cover on his prosthetic so it would resemble his other leg. In my eyes that is not a decision for me to make. Me and my husband are now trying to figure out how to ask our 5 year old if he wants his leg to look like everyone else when we have been telling him for years that his leg is cool and is better than everyone elses. I don't want him to think that he needs to look like the other kids we want him to be happy with who he is.



Your daughter is absolutely beautiful!!! Have any dentist justified why they will not help you with your daughters teeth until she is 18? I would understand if it was just a cosmetic thing you were doing just to do it. This is something that would benefit her life. At what age did she start to question her differences? Aidyn started at about 3 1/2 but we noticed him looking at his leg and then other people with a look of confusion at about the age of 1. He is a very smart little boy. A little to smart for his own good if you ask me.



I apologize that it took me so long to reply life is just crazy and GO GO GO all the time! I hope to hear from you soon.



Danielle Teixiera



Brian 8

Aidyn 5