Couple’s uneventful pregnancy left them unprepared: “Everything was fine until it wasn’t”

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We found out I was pregnant in August 2012. It was time to start our family, time to start the next chapter of our lives. The next months were going to be the best time in our lives.

I had an uneventful pregnancy. We went to all the regular prenatal checkups, including one with a 4-D ultrasound. We found out we were having a boy, and decided we would name him after my father, who had died of a heart attack a week after we confirmed the pregnancy.

Finally, May arrived. We were prepared. We headed to the hospital and at 1:15 a.m. our beautiful boy arrived.

Everything was just perfect — until it wasn’t.

I couldn’t see his fingers, and I couldn’t make out his hand. What was this? Was he going to be OK?

Colson GraceyNobody in the delivery room had an answer. The neonatal intensive care unit was called in and the doctor told us it was likely amniotic band syndrome. Within minutes, my son and husband were taken by ambulance to a children’s hospital.

I was devastated. I had waited so long for his arrival, and my boy had been whisked away. I wanted so badly to hold him. I was his mother, and I would fix this.

The days after a birth are supposed to be filled with bliss. Ours were filled with scouring the Internet for any information we could find. I saw nothing to help parents. I saw nothing to help us.

I had read all the baby books. I had all the tests. How could I have never heard of ABS?

According to the National Institutes of Health, amniotic band syndrome is a condition where stringlike bands extend from the inner lining of the amnion, the sac that surrounds the baby in the womb. As the baby develops, its extremities may become entangled in these bands. Blood flow is restricted, resulting in stunted growth or even amputation.

“ABS is spontaneous and not genetically linked. It affects 1 in 5,000 to 1 in 10,000 live births,” says Dr. Foong-Yen Lim, surgical director of the Cincinnati Fetal Center at Cincinnati Children’s Medical Center.

Our son was born with the bands still attached to his hand. The thumb on his left hand was severed. His first and second fingers were the size of golf balls. A band had wrapped around his right leg above his ankle. Thankfully, his leg and foot had formed normally, but the scar from the band was deep.

Multiple surgeons told us to amputate his two swollen fingers, but I knew that he used those fingers. He used them to put his pacifier back in and to rub his eyes.

Colson GraceyFinally, Dr. Emily Hattwick, a pediatric orthopedic hand surgeon at Children’s National Health System in Washington, told us that she could reconstruct our son’s fingers. Yes, they would be small, but he would get use out of them.

She showed us pictures of hands belonging to children just like my son. Colson had reconstructive surgery at just 9 weeks old, and will need surgery on his leg in the next few months to release the amniotic band above his ankle. He will need yet another on his thumb to lengthen it.

He is 15 months old, and he uses his fingers to pick up food and to hold his sippy cup. He uses them just the way any other child would, only his are smaller.

Our son doesn’t know any different because this is how he was born. But we worry about him learning to tie his shoes. We worry about him starting school. We also worry about bullies.

Since our son’s diagnosis, we have found multiple places of support. There are Facebook groups for parents of children with ABS. There is also a wonderful and supportive group called Lucky Fin Project that celebrates children with limb differences.

Every day he puts my mind at ease. He has a strength that is unimaginable. There is no doubt he will be able to do anything his heart desires, and we will be there every step of the way to support our beautiful, perfect boy.

X-rays of Colson Gracey

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  • shawn cooper

    I have the same condition as your son .I’m now 46 years old and an artist. Your son will learn to use what he has and will never know what he is missing because he never had them. One thing I know is don’t treat him any different, my parents never treated me as if I had a handicap. I played baseball, soccer and football and never used a special glove or anything else different . I know your son is going to be just fine and have a wonderful life. If you need any support or to talk about anything contact me……..shawn

  • allix

    I had also never heard of ABS until my little boy was born. His right hand was clinched by bands and thought it would need to amputated. He is now 8 and playing every sport, and waiting wonderfully.

  • Cassi

    My daughter also has ABS and is missing “parts”. She is 17 and a confident, adventurous young women. Most people don’t notices her differences at first because of her shining personality. I have no doubt your love for your son, his abilities despite differences, and parenting in a way just as you would have without ABS will give you the same results we’ve seen. Congratulations on the birth of your son and may God bless your family.
    In case you’re interested:
    We also have another friend whose daughter is affected by ABS more than on just her limbs. Her story is inspiring, too. I think her name on caringbridge is Kimpossible.

  • caffeine72

    I had a friend in grad school who had his right hand majorly affected by ABS. He graduated with his Ph.D. in chemistry in record time and has done very well since. It’s only a hindrance to your son if he allows it to be. As someone with two brothers you’ll have much more to worry about as he grows up than this. Best of luck!

  • Karen Gross

    Your baby is precious My MOM was 8 and lost her 4 fingers on her right hand She had to learn how to do everything all over again…..She lived to be 73 and us kids didnt even notice it while we were growing up Praying your family gets some help

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