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At birth: You can see the rocker bottom shape, along with the prominent heel on his right foot. |
Many of our trisomy kiddos are born with the achilles tendon so tight that it pulls a bone in the foot, the tallus bone from a horizontal position to a vertical one. Sometimes this is termed an equinus talus, yes, equine like horse. Also, here's another spot that the "incompatible with life" label gets in the way. Many find it hard to find doctors who are willing to treat this condition, because "they're going to die anyway." Now, you won't find me arguing that there are a lot more important issues than the feet. That's why Aaron's corrections didn't even start until after he was one year old. "Normal" babies with challenges like this are often cast within a day or two of birth. But once those life-saving issues are taken care of, there's no reason to not undertake life enhancing measures. Most of of the following is fairly technical because it's designed to be used by parents who want to encourage their doctors to help them.
Aaron’s Vertical Talus Journey
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Three weeks old. The left foot curves up and out. It can't be seen well, but the right foot does also. |
Aaron was born with bilateral vertical talus.
Because of numerous life-threatening
issues with his heart, lungs and airway, his feet were not treated until he
was
almost 14 months old.
Because he had a tendency to
respond a little slower to most therapies, the decision was made to recast him
every two weeks instead of every week.
Aaron is a patient at Shriner’s Hospital in Salt Lake City
and is treated in their club foot clinic.
The orthopedist there used a reverse Ponseti technique in casting him
and used plaster casts instead of fiberglass because of the additional ease in
molding them. He tolerated casting
very well, only fussing the first 24 hours of the first casting
experience.
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Notice how his left foot is angled upwards and out. Approximately 2 months |
Pictures were taken of all angles of his feet and ankles
prior to casting and at each new appointment.
X-rays were done before the first casting and after the
second (four weeks apart with two sets of casts in between).
After the second set, it appeared
that the bones were shifting and his surgeon recommended surgery.
One more set of plaster casts were
applied and surgery was scheduled for two and a half weeks later (total casting
time:
six and a half weeks).
On September 16th, 2011, at age 15 months, Aaron
was admitted for bilateral percutaneous talonavicular pinning with Achilles
tendon release. Because Aaron
liked to beat his feet on the side of his crib and on the floor, essentially
beating off his plaster casts, his plaster casts were then overwrapped with
fiberglass to protect the pinning sites.
He did develop a fluid imbalance which was hard to manage given that it
was impossible to get an accurate weight due to the casts. He developed swelling in his
extremities which necessitated a cracking of his casts. These were then rewrapped with
coban. He was discharged four days
post-op.
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View of the right foot angled upwards and out. Aproximately 2 months. |
Three weeks post-op, casts and pins were removed, he was
fitted for AFOs, and recast to wait for AFOs to be made.
Three weeks later (six weeks
post-op) casts were removed due to a need for IV sites, but AFOs were not
applied as he was in a PICU for pneumonia, but not at Shriners.
His surgeon felt that it would not
cause a problem to not apply his AFOs immediately as he was not bearing weight
on his feet.
One week post-cast removal, Aaron was fitted with his
AFOs. He wore them approximately
23 out of 24 hours a day for three months, at which time he out-grew them. It was determined that when he outgrew
them, more would not be made as he would not need them.
Surgery was one year ago, today. His feet are still flat and forward facing. He uses a stander for therapy daily and
has begun to bear weight on his feet voluntarily for several seconds at a
time. There have been no signs
that the bones will re-dislocate.
Follow-up x-rays are scheduled for 18 months post-op.
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Ten months post-op, seven months post-AFOs. Feet are still straight. |
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