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.
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.
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,
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,
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.
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.
Johnny was born with Tracheal Esophageal Fistula (TEF) and with amniotic band restriction on some digits on his hands and feet. We consider him lucky as ABS could have affected whole limbs.
Compared to the TEF the ABS seems like nothing, only cosmetic — Johnny is perfect in our eyes. As Johnny gets older other kids are starting to ask about his fingers and toes and they are pointing it out to him.
John and I can only hope to instill in him the importance of what’s on the inside and that everybody is different and should never be judged by the outside.
I will conquer the world with ONE hand.
Karl Akl born on November 26 in Lebanon, Beirut with his left hand missing due to ABS. We (Karl parents) did not know about his missing hand during the 9 months of pregnancy.
On the day he was born at 9:35am Karl’s dad was holding the camera and taking a video when he noticed the hand but didn’t show any surprise in order not to inform Karl’s mom directly. Doctor and nurses were all surprised and were afraid how to tell the mom.
From my day of conception I was extremely sick a vomited every single minute of every single day! And this carried on until the day of Jacks birth! I went for my first scan and 12 weeks and it was spotted straight away something wasn’t right.
Doctors could pinpoint exactly what was wrong because Jack would always hide his right hand. Eventually I was told he was either missing fingers or his fingers were fused on that right hand. It was now just a waiting game until he was born until I knew for sure exactly what was wrong.
“Did you know she was missing her arm?”
I had just delivered my second little girl. It was early May, and she was just over a week late. I had been induced the night before by my amazing doctor, and had had a very smooth delivery. I was just about to relax into my afterbirth and loving on my sweet newborn, when the nurse between my legs dropped that little bombshell on me.
Immediately I go into survival mode.