Quentin's Story
by Robin Hammer

Quentin Hammer was born with amniotic banding affecting his right hand and right foot below the ankle.

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Two years ago, amniotic band syndrome was a term that I was unfamiliar with....that was, until the birth of my first child.  Our pregnancy, although "planned" was unexpected, as we had assumed it would take many months before we could conceive.  Throughout my pregnancy, my husband, Steve, seemed to "detach himself" from the whole process.  I was due in early March and we didn't even buy any "baby things" until after Christmas because he kept insisting that something could go wrong..... that there was no need to get excited until the baby actually arrived. It seems that through my work as a preschool special education   teacher and then as a school psychologist, Steve had learned first hand of the delicate balance of Nature involved in having a healthy, "normal" baby.

When we took the first home pregnancy test, and it was positive, like any anxious first-time mother, I called my primary care physician, only to be told that I must wait for 3 - 4 weeks for an appointment.  A week later, after I began spotting in the middle of the night, an appointment was scheduled immediately for an ultrasound to rule out a tubal pregnancy.  I have never known such joy as when the ultrasound technician found the baby's heartbeat and assured me that our pregnancy was indeed a reality and was progressing "normally".  At that point, I began to relax and enjoy my pregnancy while Steve continued to worry. Our only other ultrasound at 5 months later did not give us any cause for concern: our baby appeared to be sitting low in the womb, with his feet crossed and tucked under him as he sucked his right thumb.

As Quentin remained breech throughout the pregnancy, I was scheduled for a C-section in the early morning of February 27, 1996.  It was on that day that Steve and my life would take a whole new direction.

As my doctor prepared to bring Quentin into this world, I remember his saying, "I see a scrotum" and thinking.... it's the boy that Steve and I had both secretly hoped for!  So, the beginnings of my dream had just become reality.... a boy we would name Quentin Robert.

As they whisked Quentin away to "clean him up", Steve stayed with me until I was stitched up, and then he was called into the nursery to see our new son.  As I was wheeled into recover, Steve stood there waiting for me and I could tell something was wrong.

"Well," I said, as I grabbed his hand.  There's the boy you wanted to teach how to fish, to take to wrestling meets......" As tears filed his eyes, Steve began to explain that there was something "wrong" with our beautiful boy.

The doctor quickly stepped into the room and began to explain to us that our baby was born affected by amniotic band syndrome. I scanned the recesses of my memories and came up blank as to what this might be.  The next few minutes were filled with emotion as we mourned the loss of our "perfect" son and began to battle the feelings of guilt, worry, doubts, anger....

I didn't even get to hold Quentin, as there was an AngelVan waiting to whisk him off to Vanderbilt Hospital where they would determine whether his right foot would have to be amputated, or whether the band could be released. As I stared at him through the plastic bassinet, hooked up with wires everywhere, I searched for an answer as to what was "wrong" with my child.  He looked just like Steve -- dark complected and 'ethnic'.  His right hand, tiny and beautiful, had a short stubby thumb attached to his palm, with an intact pinky and three middle fingers  which were conjoined and amputated above the first knuckle.  His right foot had one intact toe, a "squished" middle toe, and a small hole and and a sliver of a nail where the big toe should be.  The big toe area was twisted up and connected to his shin, with a band wrapped tightly around the ankle and foot.

The next few days were just a whirlwind of emotions as Steve and I struggled to adjust to being new parents as well as being the parents of a child who had limb differences.  We were fortunate to be hooked up immediately with Vanderbilt Hospital where Quentin has received all of his care: four surgeries thus far and countless doctors' visits. 

He had his first operation when he was a little over one month old to release the band around his ankle by doing a z-plasty.  His second surgery was three months later when his hand doctor released the middle and ring fingers, taking a skin graft from his hip to cover the ring finger.  The third surgery came at age 7 1/2 months, with tissue expanders inserted around the ankle to help loosen up the tight skin.  At age 9 months, Quentin underwent his last surgery thus far, with all 3 doctors working together to split and reattach a tendon in his foot to straighten the walking surface, move a useless bone from the foot (a toe bone that had no skin pocket) up to his index finger to add length and a growth plate, and to redo the z-plasty to loosen the skin around his ankle. 

In between the surgeries, Quentin also had several casts to help straighten the twisted foot.  Through it all, Quentin has been quite the trooper, recovering from each procedure quicker than we ever could have imagined.  He has received weekly physical therapy since he was about 5 months old to help us in improving the range of motion and strength in his right ankle and calf and early intervention services to help the baby-sitter learn developmental activities that could help Quentin grow and develop to the best of his abilities.

A year ago, Quentin was diagnosed as having lymphedema in his right ankle, with four layer compression wraps and a Jobst stocking used to bring down the swelling.  Recently an MRI showed us that rather than excess fluid, Quentin now has much excess tissue in that foot, meaning that we could opt for another surgery to remove the tissue if we choose.

Through Quentin's first two years, our marriage and our lives have been changed in countless ways.  I have learned that although Steve and I deal with adversity in two totally different ways, it takes both of us to make it over each hurdle together.  With each surgery, I would be an emotional wreck when they took my precious baby from my arms to the nearby OR, whereas Steve would fall apart when we went to see Quentin laying in his bed in recovery.  I deal with Quentin's differences on a daily basis, constantly searching for more information, battling the insurance companies, and talking with others about my experiences, while Steve deals with it periodically as he is hit with bouts of anger or sorrow at the unjustness of Quentin having to deal with this.  Through our journey as parents, we have learned that we need each other, to educate ourselves as we advocate for our child, and to enjoy all of the joy Quentin brings us with his determination and love of life!

While I would have never "wished" for Quentin to be born with differences, I wouldn't trade him for all the "perfect" children in the world.   He's mine, and he's one of a kind!

*** Robin Hammer welcomes your email.

Quentin celebrates his first birthday... notice the lymphodema and amputations in the right foot.

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