Stories

Jay’s Story

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Hello! My name is Taylor, and I’m Jay’s mother. In November 2015 I found out I was pregnant. We were excited and anxious like most first time parents are. We found out (early) that we were having a little boy! We had a pretty uneventful pregnancy up until our anatomy scan. At our anatomy scan we were told they found an extra membrane near our baby boys head and referred us to a specialist. We met with the specialist who told us he had Amniotic Band Syndrome.

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I have ABS.

Amniotic Band Syndrome

When I was born, my left hand had no fingers, just nubs. My name is Kelsey. I am almost sixteen years old. After I was born the doctors did not really know what was exactly wrong with my hand. I was admitted to a children’s hospital as soon as a day old. I had a total of two surgeries. My first surgery was at the age two, they took bones out of my toes to put into my hand. I had to learn how to walk on my feet afterwards.

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ABS toes

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Hi, I’m 34 and have ABS involving just my toes. I grew up never knowing the cause, my parents were never told. They said it was because I stuck my feet through the amniotic bag and my toes were lost. As I got older I knew that wasn’t true and with the internet available I did my own research and finally know the cause is Amniotic Band Syndrome. I always hated my feet and do envy people who walk about in sandals.

Now I am less self-conscious but still won’t walk barefoot in public.

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Sophia’s Story

We had a 20-week ultrasound done and they found a two vessel cord and we were sent to a specialist to make sure that there was nothing more abnormal that they weren’t seeing. When we saw the specialist they noticed that our little girl’s fingers were not separating and they could not see all the toes on her left foot and no toes on the right. We were told that we just needed to wait until she was born to really determine what was going on as the ultrasounds couldn’t really tell us everything.

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Oliver’s Journey

Oliver's Birth story

My son, Oliver was due on 6/11/15. Our pregnancy got complicated around 18 weeks, when the amniotic banding was first detected in an ultrasound. From then on, my husband and I were warned to be prepared for our son to be born with a missing limb and the fact that my amniotic sac had been “weakened” so my water could break at any time starting at 18 weeks.

We went to weekly or biweekly ultrasounds and they tried to monitor where the banding was,

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I’m Still Lejendary

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My pregnancy was like any other pregnancy until my 20-week anatomy scan. We found out that our baby boy had Amniotic Band Syndrome and would have only half a portion of his right arm and a full left arm. I, like many others, had no idea what amniotic band syndrome was and had never met anybody else with it.

I was initially sad, fearing the torment and all the things he would not be able to do. Of course, everyone who is not going through it has encouraging words,

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Mommy Of An Angel

A Mother is not defined by the number of children you can see, but by the love that she holds in her heart

After trying to conceive for over 6 years, my husband and I found out in October 2015 we were finally expecting. This was the happiest day of our lives thankfully our prayers had finally been answered. We followed every doctors appointment with extreme excitement hearing our blessings heart beat and seeing them in many ultrasounds but all of that changed on Feb 6th, 2016.

We went eagerly to our 20-week anatomy scan hoping to find out if we would be having a beautiful baby girl or handsome baby boy.

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My son Kyren

Kyren

This is my baby Kyren, he was born without his left hand. When I went in for my 20 week ultrasound I was told there was something wrong with him. I went to several different doctors and had multiple tests and ultrasounds done, after all those I was told his left arm didn’t develop all the way and he would be born without his hand. I was so worried and scared.

Once he was born, the moment I laid my eyes on him I saw no imperfections whatsoever he is perfect.

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Elijah needs a family

He was born without feet and missing some digits on his hands. Elijah is growing up in a baby house with other younger children with a variety of special needs. If Elijah were born in a loving family he would thrive and grow up to live a full life, never seeing what makes him special as a disability or a limitation. His caretakers at the orphanage take good care of his needs but nothing compared to what he could receive in a family.

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Saving Fallon’s foot

On May 23, 2015 our sixth child, Fallon, was born extremely premature. She graced us with her presence at only 25 weeks gestation. Her birth was a traumatic one requiring an emergency c section under general anesthesia. They had her delivered in only a minute. Upon inspection of the newborn it was discovered that there was a large lactation on her foot. It was originally believed she was cut during the crash surgery.

The degree and type of cut lead to the diagnosis of amniotic band syndrome.

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