Stretching Toward Her Dreams : Medicine: Soviet surgery procedure is being used to lengthen the short leg of a 9-year-old Scripps Ranch girl who hopes to walk without pain someday.
Jessie Wusthoff dreams of being a ballerina, a skier, a soccer player. And at other times, she dreams of living a normal life and walking without pain, with a fine, even gait, like her friends.
Jessie, a 9-year-old Scripps Ranch girl about to enter the fifth grade at Rolling Hills Elementary School in Poway, once skied, pirouetted and kicked a soccer ball with the help of a prosthetic device. But, from birth, Jessie’s left leg and foot were not normal.
Now, through an innovative leg-lengthening method pioneered by a Soviet doctor, Jessie’s left leg should eventually be level with her right. Had she and her parents not opted for the method, doctors say her left leg would have ended up 7 1/2 inches shorter than her right.
Jessie was born with a congenital condition for which the cause has not been determined. Her mother, Karen Wusthoff, 42, who teaches at Jessie’s school, suspects it was caused by an anti-nausea drug she took while pregnant.
Earlier, Jessie had danced, played soccer and skied by using a prosthetic device attached to the base of her left foot, which is smaller than her right. But doctors said that, as she grew taller, the discrepancy would grow more pronounced, and surgery would be unavoidable.
A doctor at UCLA suggested amputating the foot, a drastic measure often employed in such cases and usually in early childhood. Jessie’s own doctor and her parents held out, believing that somehow, some way, a measure might surface that would save Jessie’s leg.
It came in the form of the Ilizarov method, which Soviet physician Gavriil Ilizarov first used in 1951, in his native Siberia. His method was at first so primitive that he used bicycle spokes to connect the patients’ bones with the circular frame used to elongate the leg.
Jessie’s operation marked the first time the Ilizarov method had been used at Children’s Hospital and Health Center in San Diego, where three other such surgeries have been performed since Jessie’s on Jan. 6.
Jessie’s surgeon, Dr. Lisa Miller, says “hundreds” of similar operations have been performed in the United States and around the world since the mid-1980s. Miller said the method first spread to Italy, then to Canada and the United States.
Miller received her training in the method at The Hospital for Sick Children in Toronto, which she left to come to San Diego. Miller says she has been involved in “25 or so” Ilizarov operations since leaving medical school.
She said the method can be applied to “a thigh, a leg, a forearm, or really, any part of any limb.” She described the process this way:
“In surgery, a circular frame is applied to the limb with very thin wires. Then the bone is cut (in Jessie’s case, in three places). Over the next several days, bone begins to form where the cut has been made.
“The frame gradually pulls apart the ends of the bones, at the rate of a millimeter a day. New bone starts to fill in in the gap you’ve created. The new bone is called regenerate bone. At the same time, (the practice) also stretches the soft tissues, the skin, the nerves and the tendons.”
The operation is never a case of the patient leaving and having nothing more to worry about. Recovery time is slow and painful, and intense physical therapy is a given. In Jessie’s case, that was the tough part.
As Miller explains, “the patient’s family does the turning of the frame,” which meant Jessie’s mother and father taking a wrench and “cranking” the bolts on the device eight times a day.
The stainless-steel pins connecting the bone with the frame must also be cleaned to deter infection, which, if it permeates the bone, could create a series of new problems that might require additional surgery.
After the operation, Jessie’s frame contained 31 pins. Eight have been removed. Pins came out of the foot in March. The section of the frame between the ankle and knee will be removed later this month, and finally, in October, the part between her thigh and knee will be removed.
She will then be headed to complete recovery, or as near to that as she can hope for.
Miller sees the Ilizarov’s virtue as “allowing us to correct a lot of deformities, particularly complex deformities that previously weren’t as readily treated.” While correcting limb-length discrepancies, it “can also correct angular and rotational deformities simultaneously,” she added.
“For example, Jessie didn’t just have a short leg. Her leg also rotated outward to an abnormal degree. She also had an angular deformity in the femur (the thigh bone) and the tibia (the leg bone).”
Miller lengthened both the tibia and femur, as well as corrected the rotational and angular deformities. In two years, Jessie will undergo another operation to, in Miller’s words, “lengthen the tibia.” And that should complete the process.
Miller called Jessie’s long-term prognosis “quite good. With the condition she has, a lot of people require amputation, because the discrepancy is so large.”
She will inevitably have “limitations, such as stiffness in the ankle, but it’s only because she didn’t have a normal ankle to begin with. She may also have minimal stiffness in the knee, but she should be able to walk, run, play sports . . . in short, do everything she wants to.”
Jessie told her one of the first things she wants to do, Miller said with a laugh, was “wear boots.” She wasn’t able to before “because her foot used to be pointed down, like a ballerina’s. So, part of what we did was flatten her (left) foot.”
Much of Jessie’s recovery has involved the emotions. A primary wish is that kids “not stare,” and she most appreciates people, like her fourth-grade teacher, who refuse to treat her as a cripple.
“I don’t like it when I drop something, and a bunch of kids rush to pick it up,” she said. “That makes me feel like a baby, and I’m not a baby.”
Part of the pain has been wanting to do too much too fast. She’s excited, she said, about getting the chance to once again sleep over with friends (a practice she renewed last week) and to go camping, which wasn’t as hard as she thought it would be. She even made it down a huge hill, like everyone else.
She has become friends with Martha, a child from Calexico and the second patient at Children’s to undergo the Ilizarov method. She and Martha chat on the phone to, in Jessie’s words, “compare notes.”
“She called and said her foot was having a spasm,” Jessie said. “She wanted to know what to do. I had already been through that one, so I helped her. She’s real nice.”
“I never felt Jessie was unlucky,” her mother said. “And, when you look at some of the other kids at Children’s--kids with tumors and brain surgeries and all sorts of physical impairments--you feel fortunate that your child’s condition isn’t worse.
“It’s been hard at times, but we feel hopeful. Jessie has come a long way, and this method makes a lot of things possible. I feel grateful for it. It may not be for every child, but it’s definitely helped Jessie.”
