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My life with Accidental Amniotic Band Syndrome

Although this condition can happen naturally, mine was a bit of a screw-up. For those of you who don’t know, Amniotic Band Syndrome is a condition where the bands of tissue surrounding the baby become entangled with the baby. This cuts off circulation to parts of the body such as fingers and toes which results in the limbs dying, not growing, or being squeezed off. There are some situations where the bands can wrap around the neck or other parts of the body and become fatal.

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My Story of ABS

I was born with ABS in August of 1995. Doctors confirmed the ABS on my hands and one foot, as well as a cleft lip and palate, and a brain disorder called hydrocephalus. My right hand had all four fingers squished together, my right foot had the first three toes formed together. My right ankle and the index and ring fingers of my left hand both showed signs of constriction but did not impair me.

I have experienced several surgeries as a result of all of these medical problems.

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We are in this together!!

Hello, my name is Tia. I am 23 years old, and I was also born with Amniotic Band syndrome. Which affected some of my fingers on both hands, two bands that affected both of my legs right above my ankles and two toes on my right foot. I’m just writing to you all to let you know even though we are born different we are special, we are relentless, and we should be proud of who we are.

On a personal note,

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All Grown Up

My son, Anthony, was born 2/9/1995 with ABS that had cut off growth of some of his toes on both feet. He has only nubs of toes (with no bone) for a big toe on one foot but the other foot he has a big toe. Both feet have middle toes that were wrapped with bands that caused toes to either not form at all or only somewhat.

The amazing thing is, the day he was born, the doctors held him up by his fingers and let his feet touch the table and held him to walk.

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My story

I’m 12, I’ve lived with amniotic band Syndrome all my life. I found out that it was called ABS about two years ago. I live in the uk, Wolverhampton and every-time I wanted a prophetic or needed an operation or I had a ache in that area, I always hand to go to Birmingham. The uk never knew about what to do. Birmingham was the place where I learned to tie my laces, I leaned how to write properly, I saw other people with disabilities,

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Losing Wallace

In November of 2017 my husband and I welcomed a beautiful and healthy baby girl into the world. We were delighted when we learned I was pregnant again in January of 2019. My pregnancy was unremarkable but uncomfortable. We learned that the baby was a boy around 12 weeks and named him Wallace Rainer, after 2 of our favorite poets. I started having strong and frequent Braxton Hicks contractions around 25 weeks that were disorienting but harmless. My 20 week sonogram showed a happy,

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My son Maleek

My son was born August 22, 2011 with ABS. I was diagnose with the condition at 4 months. He is missing his fingers and left foot also on his right foot his big toe is missing and the rest of his toes is deformed.

My son is 8 years old now. He asks me now why is he missing his left foot and I have both of mine. I try my best to explain to him, but I also start to cry and ask why did this happen to him.

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ABS on babies toes

My beautiful baby girl was born with ABS on her three middle toes. She gave us quite a fright as I went to hospital for the 4th time with reduced movements. It was noticed that her heart rate was like she was in labour but I could feel no contractions.

The hospital decided that I should be induced as with the heart rate and episodes of reduced movement plus my previous history of a premature baby it would be better to get her out.

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Amniotic Band Rupture Sequence

At 19 years old, falling pregnant is the last thing you really ever think is ever going to happen. With being so young and having to interpret that your about to bring a beautiful baby into the world within just a not so far away 9 months, complications within the pregnancy definitely never crosses your mind. I feel as though awareness and information about these situations that happen within pregnancies aren’t recognised enough or educated enough.

Finding out I was pregnant at an early 4 weeks,

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Jayden’s story

This is my daughter Jayden’s birth story. She was born on July 4th 2012. Her original due date was August 10th.

My doctors discovered that she had two bands wrapping around her, one around her right arm and another around her left ankle. I had to go in for an emergency c-section. If I would have waited and had Jayden full term she would have lost her right arm and her left foot. Jayden had to spend 22 days in Detroit children’s hospital in the NICU.

Read more Jayden’s story