Babies/Children – by Parents

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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John Anthony Eddy


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.

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Karl Akl with One hand

He will conquer the world with one hand

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.

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My little boy Jack

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.

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Mommy’ Little Lily Pad

Smiling child standing in crib - arm amputated in the womb by Amniotic Band Syndrome

“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.

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Mommys little jo jo

Smiling girl - amniotic band syndrome affecting her hand and feet

Her name is Samantha but to me she’s mommy’s little jo jo.  She is now 6 yrs old wow how time flies by! She was born with amniotic band syndrome affecting her hand and feet.

When she was born I didn’t know how to feel or what to say to anyone when they would ask questions. She is a very bright girl and loves life to the fullest.

I wish I’d known there where more people like her long before now!

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Phato’s story

Newborn baby with bilateral clubfeet - missing fingers and toes caused by amniotic band syndrome

During my pregnancy, I started to see a Gynaecologist when I was two months pregnant. Everything was fine. I was five months pregnant when my Gynaecologist told me that there was something unclear on a scan. I never thought there was anything to worry about but he referred me to another Gynaecologist. I went there and that was when I was told that my baby had Clubfeet.  The Gynaecologist said, “a rare Clubfeet, I’ve never seen this type of a Clubfeet before”.

All sorts of things and questions came into my mind,

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Kai’s story- Fetal surgery at 19 weeks

In Burmese the name Kai means “unbreakable.” This is a definitely a story about a little baby boy that refused to submit to defeat. He truly is unbreakable.

The Beginning of Our Whirlwind Journey

My husband Rory and I went into the Millcreek Imaging Center to get the ultrasound of all ultrasounds, the one which reveals if you are having a boy or girl. We were so excited to finally find out what we were having. For pretty much the entire pregnancy I had a feeling it was a boy.

Read more Kai’s story- Fetal surgery at 19 weeks

Oliver’s Story

baby on lap - birth defect fingers deformed

My son Oliver was born on February 21, 2014 after a long pregnancy where they decided to take him a week early since he was big. Born at 9lbs and 21.5 inches long! After the c-section they wrapped him up and gave him to my husband. When I got to see him my husband had a frightened look on his face and said I don’t want to scare you but his left hand is not developed. I couldn’t see because he was wrapped up and they were taken from the room while the doctor finished my surgery.

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