Teamwork at Children’s helps heal Redding boy born with four congenital defects
When Randy and Keren Bogue got married, they knew they wanted a sibling for their son Ronnie. But when Andrew was born in 2002 at the Mercy Medical Center in Redding, Calif., the joy of having their second son was muted by the challenge of Andrew’s congenital defects.
Shortly after birth, Mercy neonatologist, Craig Traugott, MD, and a cardiologist colleague diagnosed Andrew’s A/V canal heart defect. Dr. Traugott also identified three other defects: a cleft lip and palate, a tight tongue frenulum and a non-functioning right thumb.
Andrew Bogue, 4, sits between his parents, Randy and Keren, during a follow-up appointment at Children’s Outpatient Center. Andrew can now hold a pen with both hands, including his right hand, where his index finger was reattached to act as a thumb.
Dr. Traugott referred the Bogue family to Redding pediatrician Christine Austin, MD, a former Children’s Hospital resident. With her guidance, the Bogues began working with the out-of-town specialists they needed to help Andrew.
All that driving racked up some impressive mileage on their cars, including 80,000 miles in two years on a 2003 Subaru Forester.
At Children’s Hospital & Research Center Oakland, one team of clinicians repaired Andrew’s A/V canal defect and another team replaced his non-functioning right thumb with his right index finger.
Children’s support staff also pitched in, including Child Life specialists, social workers and a certified hand therapist.
Before going to Oakland, Sacramento clinicians repaired Andrew’s cleft lip and palate, while a Redding physician clipped his tight tongue frenulum.
Then, when a cardiologist the Bogues had consulted suggested delaying Andrew’s needed cardiac surgery, they decided to get a second opinion.
Children’s cardiologist and surgeon team up to fix heart defect
They called Dr. Austin and she suggested they make the four-hour drive to Oakland to see Dr. Saba.
“They fell in love with Ziad,” said Dr. Austin. “Dr. Saba’s ability to explain things clearly to parents is a real strength.”
Dr. Saba did an echocardiogram, confirming the original diagnosis and met with the Bogues. “We immediately knew (Dr. Saba) was the doctor for Andrew,” said Keren. “The entire staff (at Children’s) was wonderful and could not have impressed us more. They were all amazing.”
Children’s Surgical Services staff scheduled Andrew’s operation and surgeon V. Mohan Reddy, MD, on Children’s Medical Staff, performed the procedure at Children’s. Andrew was then only 5 months old.
The Bogues were pleased with their pre-op preparation; a Child Life specialist met with the Bogues, and made sure to include their older son Ronnie, then 11.
The family was impressed that Andrew’s three-hour surgery and five-day recovery took less time than they had anticipated.
Children’s hand specialist makes new thumb from index finger
When they decided to take care of Andrew’s hypoplastic thumb, Dr. Austin again referred the Bogues to Children’s.
“(Dr. Griffin) was awesome,” said Keren. “After the first appointment, we were feeling much more comfortable having the procedure done to give Andrew a working thumb. Dr. Griffin saw us three times. He was very patient and explained everything until we understood and were sure we wanted to move forward.”
A procedure and project like this is a good example of the multidisciplinary team approach routine at Children’s Hospital. “Of all the hand procedures, for the right candidate, this is the most rewarding,” said Dr. Griffin. “But I really can’t do it alone.”
Clinical Social Services staff helped the Bogues with parking and food vouchers. They also arranged for the family to spend nights at Children’s Family House when necessary. “(Social Services staff) checked in every day to make sure everything was OK,” said Keren.
In December 2004, when Andrew was 2, Dr. Griffin and a Children’s surgical team replaced Andrew’s non-functional right thumb with the boy’s right index finger.
After the surgery, Andrew’s hand was in a cast, with just the tip of his new thumb exposed to show skin color. But immediately after the surgery, Dr. Griffin spoke with Andrew’s parents, showing them photographs he’d made before, during and after the procedure. “For me it was very comforting to see all that,” said Andrew’s father, Randy.
Hand therapist helps Andrew grasp use of new thumb
During follow-up visits, Andrew spent a lot of time with hand therapist Ginny Gibson, MS, OT, CHT, an occupational therapist with Children’s Pediatric Rehabilitation department. Twice a week for six weeks, the Bogues made the eight-hour roundtrip from Redding to work with Ginny. As Andrew progressed, they began coming twice a month.
Gibson, one of very few certified hand therapists in Northern California specializing in pediatrics, helped Andrew break old right-hand grasping habits and develop new ones. She taught Andrew to replace lateral prehension, side-by-side finger grasping, with opposition, strengthening his new thumb.
In the hand clinic he picked up tiny green plastic frogs and put pennies in a coin bank to develop better key and tip pinching ability. He graduated to making lily pads for the miniature frogs, squeezing and flattening chunks of medium green therapy putty.
Gibson also taught Andrew’s parents to continue his hand therapy by customizing activities at home to build on their clinical sessions. Using his new thumb to pick up coins or Cheerios with a tip pinch helped.
Dr. Griffin has built thumbs for two other children besides Andrew, but it’s always an eye opener to see the results. “Once in a while, I’ll see Andrew doing something two-handed and I’m amazed,” said Dr. Griffin.
Meanwhile, the Bogues are happy with Children’s teamwork and Dr. Griffin’s repair work. “It is truly amazing how much it looks like a thumb,” said Keren. “Now he has a thumb that not only looks like a thumb, it works just like a thumb.”
This article, written and photographed by senior writer Tom Levy, was originally published in the January 2007 issue of FYI, a newsletter for Children’s Hospital’s medical staff.