No Limits: Adopting a Child with Amniotic Band Syndrome

June 26, 2016 adopting again, amniotic band syndrome, amputation, June 2016 Feature - Orthopedic, missing fingers/toes, Orthopedic, prosthetics, referral 0 Comments

As mom to four biological boys, I remember the ultrasound appointments where the heart, kidneys, bones and limbs were surveyed and carefully measured. I was blessed with healthy boys and encouraging news from each of those prenatal appointments.

Often, I wonder if my girls’ China mommies had ultrasounds, and if they knew prior to birth that their daughters would have medical issues. I wonder if that affected the very difficult decisions that were made and resulted in two beautiful girls becoming beloved daughters in our family….


We brought home our first daughter in 2011 at 20 months old. Her medical need was related to a defect in the urological system and was listed as hydronephrosis. She had one surgery to correct the issue and was released from medical care.

We found her medical special need was relatively easy compared to the difficulty she had learning to accept love and a family.

She rejected me in China and would gorge herself at meal times. It was very difficult trip and a long adjustment once we arrived home. She has taught me so much about parenting children with traumatic backgrounds. Karyn Purvis became my mentor through her book, The Connected Child, and the associated videos from TCU Institute of Child Development.

In 2014, as we began researching special needs for our second adoption, we felt open to kidney/urological conditions that our first daughter had, but I kept feeling a tug at my heart for children with limb differences. We considered several special needs such as heart defects, cleft lip/palate, and scoliosis.

We reviewed several files, but my husband and I couldn’t get peace about the files. One day, while browsing agency waiting child pages, I saw her. I immediately emailed and asked for her file.


Of course, several other families were interested as well. I proceeded to call our local Shriners Hospital and to ask for a review. After reviewing the file, the doctor wrote back “amputation and fitting for a prosthesis.”

We pressed forward with our paperwork, but we were questioned by our social worker, friends and family as to whether or not we really wanted to bring home a child with limb differences. There were times that I was discouraged, but I kept reading blogs and articles about how amazingly resilient these children were. From the information in our daughter’s file and the pediatric orthopedic surgeon’s review, we were hoping for the best outcome.

With a bundle of nerves, we traveled to China. When our daughter first met us, she cried pitifully for the orphanage director. But 24 hours later, she was fine to see her again and returned happily to our arms. Her easy transition was such a blessing.

Throughout the trip she had a few difficult moments but, for the most part, she engaged in playful behavior, tried mimicking our words, and slept peacefully on her daddy’s chest. If her leg was noticed in public, we observed people quietly whispering to each other and pointing. It was obvious that they had not been exposed to many limb differences. We had seen pictures of her standing on her shorter leg, but in China, she would not move unless carried. It wasn’t until we got home that she felt comfortable enough to show us that she could actually walk.

We had our first appointment at Shriners Hospital in Greenville, SC, and the doctor decided upon amputation of her little foot.


The growth of her foot had been restricted by amniotic band syndrome, and she could not be fitted for a prosthetic leg without having the foot removed. The surgery was outpatient, and we were home by late afternoon. She spent three weeks in a spica cast, which came up one leg and wrapped around her waist.

Although it was recommended that she not walk on the cast, it didn’t slow her down, and she wore a hole through the outer layer. Within three months of surgery, she was fitted for her first leg, and it took less than a week for her to take off.

A few months later, she had a follow up outpatient surgery to release a band around what would have been her ankle and spent two more weeks in a cast above the knee. She has tolerated the surgeries and the casts well and has now been fitted for her second leg.


In the mornings, she crawls into my room and asks me to put on her leg. It really isn’t much different than putting on shoes. Because she wears an elastic sleeve to hold on her leg, she can’t wear pants that are too slim through the leg.

She has integrated into our family seamlessly. She has an amazingly resilient personality, just like many of the other children with limb differences whom I have met and cheered for through blogs and Facebook.


We are blessed to call her our daughter and wish that her China mommy could know that she runs and climbs and has no limits.

guest post by Debbie

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