Warmer weather means more than family trips to the beach and outdoor barbecues for 4-year-old Anna Barcelos. After undergoing pediatric plastic surgery at Children’s Hospital to improve congenital deformities of her left hand and feet, Anna especially looks forward to what most people take for granted: wearing flip-flops.
“I can’t wait!” said Anna, giggling as she sat with her adoptive parents, Kevin and Kendra Barcelos, in their Fresno living room. Previously Anna’s big and second toes on her left foot were fused, making it impossible to wear the popular Y-strap shoe.
Dr. Peter Witt, medical director of Children’s Department of Pediatric Plastic Surgery, corrected this and other related malformations for Anna. “See!” said Anna as she proudly thrust her arms straight out, wiggling her fingers and moving her feet. “I love Dr. Witt – he’s my BFF (best friend forever)!”
Anna was born with amniotic band syndrome (ABS), a rare condition caused by strands of the amniotic sac that separate and entangle digits, limbs or other parts of the fetus in utero. Depending on where the strands are located and how tightly they are wrapped, this constriction can cause various problems ranging in severity from mild to life threatening. Restriction of movement and decreased blood supply due to the banding may lead to digit malformation, syndactyly (webbing), clubfeet and limb amputation.
ABS occurs about one in every 1,200 births. The cause is unknown. Some experts attribute the congenital disorder to a partial rupture in the amniotic sac during pregnancy and therefore don’t think it is genetic or hereditary. Since a high incidence of cleft defects occurs with ABS, others theorize that ABS could be the result of a vascular disruption. In Anna’s case, the constriction banding created nubbins and amputated digits on her hands and feet, and the fusion of some fingers and toes. Her condition did not include cleft palate or clubfeet deformities.
“A journey of 1,000 miles must begin with a single step,” says the well-known Chinese proverb.
Born in November 2005 in Central China, Anna was abandoned a month later – on Christmas Day – in a small cardboard box near the bottom of a stairwell of an apartment building. One of the tenants found her and a government-run orphanage took the infant in.
Little did Anna know that halfway around the world – at the same time that she was left to fend for herself – that the Barcelos family had confirmed their decision to adopt a baby girl from China. Already with a large family, the Barcelos’s have four biological children – all girls – who Kendra homeschools. “My wife suggested that we adopt and at first I said, ‘No way,’” recalled Kevin, an intensive care nurse at a local hospital. But after much prayer, he, too, felt inspired to add one more child for their family to love. “We knew in our hearts that it was the right thing to do,” said Kevin.
In China most families are restricted to one child and a traditional preference for boys runs strong. This means many baby girls, particularly those with a disability, are illegally abandoned. “We knew we wanted a girl from China with special needs,” said Kendra.
More than a year later, the Barcelos’s and their children traveled with a group of other families to China to each adopt a child. Previously matched with Anna, they were very excited to finally bring her home. “When we first met Anna, she was shy about her hands but she was obviously very bright,” said Kendra, describing her first impression of her soon-to-be daughter. Already compensating for her deformities, she could walk well and “used chopsticks better than anyone else in the family,” said Kendra.
Kevin was also impressed: “Anna is very sweet and loving. She fit in well with our family right from the start – she’s very active and has the same sense of humor.”
Anna’s treatment at Children’s Hospital
The Barcelos’s returned home with Anna and later brought her to Children’s Hospital for evaluation. Dr. Witt outlined the toddler’s options and developed a treatment plan. Children’s orthopaedic surgeon, Dr. Michael Elliott, also checked Anna for mild hip dysplasia that had since resolved and a slight leg length discrepancy that he determined didn’t require medical attention but should be followed.
Triple boarded in plastic, hand and general surgery, Dr. Witt suggested completing surgery on Anna’s left hand and feet in stages. Anna had experienced a rudimentary procedure in China and Dr. Witt wanted to minimize additional trauma as much as possible.
Specifically, Dr. Witt noted that Anna’s left index and long fingers were fused, as were her ring and little fingers, her hand resembling a claw. Her fingers were short and she didn’t have any nails. Both of Anna’s feet had multiple constriction bands, and her left foot was missing its middle toe. While Anna’s right hand has some malformations, Dr. Witt didn’t recommend surgery at this point.
To improve the deformities and prevent further complications as Anna grows, Dr. Witt completed one surgery in September 2008 and another in January 2010. He surgically managed the constriction bands with excision and skin flaps, removed the nubbins, and released web syndactyly by separating the digits using skin grafts from another part of Anna’s body.
Overall, Anna’s left hand and feet look and function better. While Anna writes with her right hand, she can use her left hand more freely. Just being able to wear gloves is significant, which wasn’t possible when four of her left hand fingers were fused.
“Dr. Witt did a phenomenal job,” said Kevin. “The care was outstanding. He told us what to expect every step of the way and made sure we understood everything.”
Prior to performing surgery, Dr. Witt often suggests that the parents seek a second medical opinion. “I always encourage this,” said Dr. Witt. “They have to make decisions that could affect the rest of their child’s life – I want them to feel comfortable with the approach. They sleep better at night.”
Familiar with Dr. Witt’s reputation for being top in his field, the Barcelos’s knew Anna was in good hands. They were also aware of the medical missionary trips that Dr. Witt continues to take after more than 20 years to help care for indigent children around the world, including China.
“He’s an amazing man and doctor,” said Kevin.
Specializing in the surgical correction and management of congenital and acquired conditions including craniofacial anomalies, hand abnormalities and vascular anomalies, Dr. Witt’s team includes two other board certified plastic surgeons and performs more than 1,000 plastic surgeries a year. About 10 percent of the hand surgeries conducted at Children’s are related to ABS. Such specialized reconstructive surgery should be done by a pediatric specialist at a tertiary institution like Children’s, said Dr. Witt.
Conditions created by ABS, for example, are very complex. “Constriction banding is a wild card – you never know what you’re going to get,” said Dr. Witt. “The anatomy may be unconventional because the affected area doesn’t develop properly. A finger may not be structured the way it should be structured, or blood vessels may not connect correctly. This is very delicate surgery – you need to know what to remove and what not to.”
The procedure also requires forethought and how it will affect the patients as they get older. “When a child’s left ring finger is involved, I’m especially conscious of how it will look – that’s their wedding ring finger,” said Dr. Witt.
Anna’s reconstructive surgery for her hand and feet are complete but she may need further treatment down the road. About 15 percent of ABS patients will require touch-up procedures as they grow and develop. “The child may have problems holding a glass or perhaps a tendon needs fixing,” said Dr. Witt.
While noticeably improved, Anna’s hands and feet remain a little different compared to others. Prior to surgery, Dr. Witt discussed with Kevin and Kendra some of the challenges that Anna may face, from reduced functionality to teasing from other children. In fact, much of what Dr. Witt and other physicians at Children’s Hospital do involves counseling the patient and their caregivers.
“The bottom line is that there are ways to improve the situation – there’s hope,” said Dr. Witt, adding that advances in medicine may provide patients like Anna greater treatment options in the future. “We provide materials to educate them. Kids are so resilient, they adapt well. Many do fantastic, live normal lives, even play pro ball.”
No longer concerned about hiding her hands and feet, Anna seems to be adjusting well, too. After all, now she can slip on her favorite flip-flops – just like other people.
Story Sponsored by: Wells Fargo
Photos of Anna playing outside courtesy: iLUKphotography.