Ben's Story
Freeman Courier
October 10, 2000
Eleven-year-old Ben Davis has spent the last few months trying to regain the ability to do what most people take for granted.
Walk down the street.
Ben, the son of Rev. Robert and Victoria Davis, was born with an ailment leaving his right leg nine centimeters shorter than his left. The disease, known as Proximal Femoral Focal Deficiency, required Ben to wear a corrective lift of five centimeters to try to equalize the length of his legs.
The condition, if not treated, could cause other medical problems with his hip, back, knee, and ankle. It also makes running smoothly and riding a bike more difficult. The disease strikes 30,000 children every year. It is by what the Davises call providence that the problem was discovered early in Ben's life.
"We took him in for a baby check when he was two months old," Victoria said. "They checked his legs by flexing them, and they noticed that the motion wasn't the same," she said. The tests revealed Ben's right leg to be two centimeters shorter than his left, with the potential to be as much as twelve centimeters shorter by the time he was fully grown.
At his seventh-month check the doctor ordered a three centimeter lift added to Ben's shoe. "Ever since then he's worn a lift on the shoes we buy," Victoria said.
Now, after 11 years of dealing with the inconvenience of being born with one leg shorter than the other, Ben is dealing with the rehabilitation of a surgery that may allow him to get around without such a large lift on his shoe.
The procedure, which Ben underwent this past July, was discovered in the late 1980s when a doctor in the former Soviet Union discovered that if pressure was applied to spread a broken bone apart, new bone cells would grow in place of the break. This spreading causes the bone to be lengthened.
The operation made everyday tasks, such as walking and climbing stairs, a true challenge for Ben.
"Ben couldn't walk for five minutes without having to sit down and rest," Robert said.
The surgery seemed much more favorable than the alternatives.
"We talked with the doctors a lot and they told us what to expect," Victoria said. "Another possibility was amputation, and we said that was out of the question."
Ben was examined and his growth was charted to gain an estimation of how tall he may grow in his lifetime. Ben was expected to have a twelve centimeter discrepancy as an adult. The figures gave the doctors some idea of how far they could, and should, lengthen his leg. A young candidate for such tests, Ben wasn't always anxious to participate with the uncomfortable procedures.
"He was a little nervous," Victoria said. "This was his first leg lengthening, but he had two previous corrective surgeries. When they started doing CAT scans they had to sedate him."
Ben traveled with his parents to the Shriner's Hospital in Minneapolis, Minn., in July to have the surgery.
Lengthening the bone was a tedious process, and adjustments had to be continually made in order to keep stretching the bone before it set permanently. By applying a "fixator," which is attached to the two halves of bone to be lengthened, pressure is constantly applied to keep the new bone from setting too soon.
Six pins which protrude from the bone are attached to a bar which slides on the fixator as another screw is twisted to widen the gap between the bone. Once the bar has moved five centimeters, it is tightened down to the fixator and the spreading screw is removed.
Ben and his parents soon discovered that the surgery was the easy part of his rehabilitation. Daily sessions of physical therapy to help lengthen Ben's tendons and muscles had to accompany the spreading process, something Ben said he'd just as soon never do again.
"Physical therapy sometimes gets called P.T," Robert said. "I think we've come to call it pain and torture."
In addition to the painful bouts of daily physical therapy, Ben had to endure an even more frequent discomfort. Every six hours, day or night, the spreading screw on Ben's fixator had to be given a quarter turn to keep the regenerating bone at a consistency that would allow it to be stretched.
"The bone can't set, it has to stay a soft consistency," Victoria said. "The doctors say (the regenerating bone) needs to be about the consistency of toothpaste."
The pain was expected, but its intensity was underestimated.
"I knew it was going to hurt", Ben said, "but I didn't know it would hurt so much."
The process, Victoria said, can be as uncomfortable for a parent as it can be for the person undergoing the procedure.
"It was exciting (that the procedure may help), but it was also an anxious time. You can't fathom what it's like until you go through it, until it's your own," she said. "You just don't realize," she said.
The pins which protrude through the skin in Ben's leg had to constantly be monitored for infection and cleaned regularly. The physical therapy sessions were extremely painful, and the regiment of spreading the bone every six hours made some nights long and unpleasant.
"We had to spread the bone every six hours, and he would have muscle spasms at night," Robert said.
Victoria agreed that the therapy was, at times, a heart-wrenching experience.
"It was difficult to see him go through that pain," she said.
Ben, as quiet and polite as he is, vehemently agreed.
"I most certainly do not (want to go through this again)," he said.
The Davises feel fortunate that circumstances have sometimes fallen in their favor. Since the Davises four children are schooled at home, Ben has not had to deal with staircases and the hustle and bustle of trying to get from classroom to classroom.
Nearly three months after the surgery and what seemed like an eternity of rehabilitation, benefits of the process are beginning to show through.
So far, Ben's leg has been lengthened five centimeters, opening the door to a smaller shoe lift and considerable improvement in his mobility.
"He's only been able to walk on his tip-toes for years," Robert said. "Right now he's walking heel-to-toe for the first time since he was a baby."
Unfortunately, the operation will not give Ben all the length he needs to equalize the legs. He will have to have one more surgery to get another five centimeters, and even that may only bring the legs within two centimeters of each other, leaving open the possibility of killing the growth plate in his left leg, allowing the right leg to slowly catch up.
"The bone has a problem stretching after a certain length," Victoria said. Complications can include bending of the bone itself, causing as much of a problem as the procedure is designed to correct.
The Davises returned to Minneapolis in September to receive an update on how the lengthening process was coming along. At that time the active lengthening process ended, the Davises said. Earlier this week they returned to Minneapolis to check the progress of the bone hardening.
So far, the experience of dealing with PFFD has been a series of high and low points, the Davises said, but they take comfort in the fact that things have gone as well as they have. And, if possible, they plan to continue their efforts to equalize Ben's legs.
Robert said that the family - which also includes Hannah, 8, Sarah, 6, and brother Joseph, 10 months - keeps in mind the help they've received, as well. The Shriners, the Davises said, have been instrumental in helping get Ben the treatment he needs. They have paid for all the operations and appointments regarding Ben's leg.
The Shriners provide transportation, meals, and lodging for the patient and family up until the time they turn 18," said Don Kettwig, the Davises' Shriner sponsor.
And as the process goes on, the Davises offer thanks for organizations like the Shriners, their own good fortune, and a lot of help from above.
"The strength of the Lord is good through the trials of life," Robert said.
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Rev. Robert C. Davis
Serving the Saints in Freeman, SD
prcdrcus@gwtc.net
Received this update 9/30/02.
I wanted to let you know that we are now back in Nebraska, so you might want to change the location to Nebraska. I had not looked at the site for a LONG time. We had some changes in our life about a year ago that eventually brought us back to Nebraska in January. I just wanted to update you regarding Ben's story.
He finally got the fixator removed from his leg in February 2001 and after much therapy everything has been fine since then. We decided instead of another lengthening surgery to have surgery to stop growth on Ben's left, "normal" femur. That was done in August 2001, and Ben has had several check-ups since then showing that everything is going as planned. His right leg is catching up since his left femur is no longer growing. That was probably his last surgery, unless we decide to have one to remove the steel staples and screw from his growth plates.
We are quite thankful for the wisdom which God has given to numerous doctors over the decades, especially Dr. Gabriel who was Ben's doctor at Shriner's Hospital in Minneapolis, MN. Thank you for this support group, and please let everyone know that we are more than willing to talk with individuals regarding Ben's procedures.
Robert C. and Vicki Davis
prcdrcus@alltel.net
Received this update 02/22/2004
Ben had another surgery in June 2003 to stop growth on the inside of his right knee. This is in an attempt to correct the bone on the outside of his right knee. Right now, the "knob" is smaller than the inside one and so the weight is going off to the side instead of right down the middle of the knee. This could cause knee and back problems in his future if not corrected.
At his last check-up in December 2003, there really wasn't much change since his surgery in June 2003. His discrepancy is staying at 2.5 cm. and the angle of the bone had improved by only 1 degree. The doctor told us that at Ben's next check-up in June 2004, if there hasn't been significant improvement that we will have to consider scheduling a surgery to correct the angle and do some more lengthening.
So, we will just have to wait and see, and PRAY! Thanks for your interest in Ben's story, and if you have any questions, feel free to contact us.
Sincerely,
Vicki Davis
prcdrcus@alltel.net