My daughter is working on cursive writing. She deftly picks up her pencil with her right hand, and carefully sets it between the fingers on the left. Pressing hard, she makes one swirl after another, using her pencil to sing the song of her love for me. She writes stories, she pens love letters, she creates songs. She illustrates these messages of love and hope with a menagerie of animals, flowers, and other images that capture the beauty of the world around her.
She is not, of course, like all of the other ambitious kindergarteners in her class. She has limb differences on all limbs due to amniotic band syndrome. She is in our family because her condition brings shame and is not easily fixed in her birth country. And her life, in so many ways, reflects the resilience and adaptability that has characterized it.
We adopted a son in 2008 from Korea, to accompany another son we already had at home. Having been very close to my mother and sister, I wished for a daughter of my own with whom to build the lifelong bonds of female friendship. Wait times had lengthened for “healthy” girls, and we were encouraged to consider adopting a child with special needs. We filled out a medical checklist and waited for a referral for months without news. Then, on a photolisting in February 2010, I saw my daughter.
She was listed as having amniotic band syndrome and had only two fingers on her right hand, and only two toes on each foot. Her right hand was compressed into a knob, and her left hand was missing the top of her middle finger. A thick band graced her tiny ankle, and reports indicated that she may not ever walk. She had been passed over by many families, who feared the many surgeries and dismal reports they had reviewed.
Amniotic band syndrome is a randomly occurring, nongenetic event in which the fibers of the amniotic sac wrap around the fetus’s limbs or body. The fetus becomes entangled in the fibers, which are like rubber bands, and continues to grow within them. As this growth occurs the entangled limbs can be amputated or banded; babies are born with missing fingers and toes or whole limbs. A band across the face can cause cleft lip or palate, and amniotic band syndrome is associated with club feet. While researchers have examined possible environmental factors, no prenatal causes have been associated with this syndrome, and parents are usually surprised to find that their baby is affected.
Fortunately for babies born today in the U.S., hand and foot surgeries are continually improving and the number of soldiers returning with limb injuries and amputations has led to ever more innovation as to prosthetics and therapies. Every year methods are developed to more quickly and less invasively separate and create digits, and to more easily graft skin to improve healing times. Of course, for children in other countries, these innovations are largely out of reach, and parents must make difficult decisions amid societies where differences are stigmatized and intensive health care is out of the average family’s budget.
After researching the condition and consulting with an international adoption physician, we took the plunge and committed to adopt our girl. We kept her birth name, JiSeon, which means “wise and kind.” While we waited, she received surgery to release her ankle band with a z-plasty.
In August we flew to Korea to pick up our JiSeon, and were warned by adoption officials about the seriousness of the deformities and were told that had she stayed in Korea, she would have needed to attend a school for the mentally and physically disabled. Then… a door opened, and there stood our lovely girl. She was walking, she was picking things up, and she was happy to see us!
After returning home, we visited a congenital hand and foot clinic and surgeons warned us that the knob on JiSeon’s right hand was blue because of inadequate circulation. In a series of two surgeries, the fingers were released; first the index finger, and then the ring and middle fingers were separated. Each time skin grafting from her groin was used to create the new sides of the fingers, and a cast was applied to the arm up to the shoulder so she could not remove it. After three weeks, the new fingers were revealed. We needed to cover the hand and soak the scabs off, but that’s it! Apart from a day or two of soreness and irritability, JiSeon did not experience pain and was up and mobile within hours.
The hand surgeon provided interesting insight about children with limb differences. Because the child has to adapt and use different methods to accomplish the daily tasks we take for granted, new brain pathways must be developed and children’s minds are “rewired” to develop alternative ways of using the limbs. She told us that children with limb differences tend to be very intelligent and innovative, and that they aren’t the kind of children who like to watch a lot of television and tune out.
Another interesting development was that although she was clearly right-handed before the first hand surgeries, she switched over to using her left while the right was casted. She learned to write, draw, and eat using her left hand instead. At first she wrote many backwards letters as her brain adapted to writing a reflection of what it was thinking, but her passion for writing won out and her writing became measured and neat. At five years old, she is writing in cursive and drawing complicated diagrams. We were told when we adopted her that she loved office supplies and notebooks more than any toy, and this was true! We are so proud of how well she has adapted to using her hands in new ways.
In April of this year, she visited the hand and foot clinic again and the decision was made to refine the middle finger on the right hand and to separate her big toes from the mass on each foot. The foot bones were becoming compacted and a working big toe would offer stability and balance. JiSeon felt some anxiety about the procedures but kept her eyes on the prize — Hello Kitty flip flops — and walked proudly into the operating room.
Again, after casting and a few sore days, she was ready and waiting to have the casts off to see her new feet. Three weeks later, she was able to walk and move again, and returned to school with a smile.
We anticipate a few more surgeries as she gets older, and she will lead the team in the procedures that will be needed as the fingers and toes tighten and scar tissue limits movement. She knows that this is a necessary part of her life and while she does not look forward to the surgery, she is aware of the benefits of mobility and, as she becomes older, cosmetic advantages.
For now, we watch this beautiful and smart young lady with admiration as she catches what life throws at her. Her ingenuity and sense of humor are evident; her eyes sparkle with wonder. Her challenges have given her courage and empathy, as she educates her classmates about her syndrome and shows compassion for other children with disabilities. In fact, she counseled her aunt through an eye surgery this month with a “what to expect” phone call and a get well letter. She is the consummate youngest child, outgoing and flexible, and yet, she is a trailblazer with an independent streak. She is artistic and sociable. We can’t imagine life without her.
— guest post by Tracy
At NHBO, we love Family Stories. And we know our readers love them, too. Beyond being encouraging and informative, Family Stories shared here have actually resulted in children coming home to a forever family. If you’ve adopted a child through China’s special needs program, we hope you’ll consider sharing your family story. It just may be the reason another family considers that very special need.
Thank you SO much for this wonderful post! We are awaiting a referral for a little girl and amniotic banding is among the needs we are open to. I had a basic knowledge of the syndrome, but your post has furthered my understanding and assured me that it’s totally “doable”! Thank you!!
Wonderful article. So well-written! Really gives the reader a sense of your daughter’s personality as well as the physical issues. Best of luck with your sweet girl!
What a precious child. Thank you for sharing your journey and enlightening us as to her condition. I was not aware of all the details and the possible outcome for children with this syndrome. Much love to your family xx