Jetson's Treatments and Progress
Jetson was born with some obvious problems with his limbs, though it took the doctors a few days of tests before they named his condition Arthrogryposis, which basically means that he has multiple contractures or stiff joints and muscles.
At birth he was like this:
- talipes (club foot) on both feet, the right side originally seemed more deformed (Congenital Talipes Equinovarus).
- both knees were stiff, more so on his left side. His left leg was pulled across his body.
- both elbows had about 30 degree of bend.
- very weak shoulder muscles - he could only make very slight movements of the arm.
- adducted thumbs - both his thumbs were clenched in tight.
- his finger and toe movement was very good.
- mentally alert and fed well.
As you can see in some of his photos, he was initially treated with leg plaster casts that were put on at day 3 or 4. The casts are part of the Ponsetti method of treatment for Talipes (club foot). Orthopedics also used the casts to increase the range of movement in the left leg, by putting the leg in more of a bend each time the casts were changed. These casts were initially changed each week for the first few months.
Jetson was wearing a thumb splint on his right hand since the first few weeks, gradually only having it on at night. It worked very successfully to hold the thumb out. After about 7 months the physios agreed with us that it has improved greatly and he probably does not need to continue wearing it.
At about 10 weeks the orthopaedic surgeons performed a Achilles tenotomy, cutting both his left and right Achilles tendons in the ankles in order for them to elongate and allow the foot to dorsi-flex fully. This is a common procedure in the treatment for club foot. Just prior to his 2nd birthday, the tenotomy was repeated on his right foot, as it had not worked as well as hoped.
After a hip x-ray at about 4 months, the orthopaedic specialist decided that Jetson needed to wear a Pavlik Harness for the treatment of Hip Dysplasia (dislocated hips). Jetson had been having regular ultrasound scans to check his hips for this condition, but it was not clear until he was several months old that his right hip was not developing correctly. The harness holds the hip in an abducted and flexed position, which allows the best orientation between the femoral head and the acetabulum, allowing the hip joint to remodel and develop normally. The harness is worn full time until the hip has stabilized, with only an hour a day where it is removed for bathing and physio. On July 22 a hip x-ray showed that the hip was developing well, and it was decided to reduce the time in the harness to just when he is sleeping, then eventually at 13 months (Dec) he was able to get rid of it forever.
Jetson was fitted with his first set of AFOs (ankle-foot orthotics) at about 4mths. For many kids with club foot they wear 'boots and bar', but this was not suitable for Jetson as they wanted him to maintain his knee and hip mobility, and because of the Hip Dysplasia. Shown on the left is his third set of AFOs, when he started to stand and needed some grip underneath the boot. At four years of age he is still wearing AFOs. Below is his collection so far!
Jetson undergoes regular physio appointments. At home we try and work on his joint mobility whenever we can, moving and stretching his hands, elbows and shoulders. After his bath, we get the chance to work on his feet, knees and hips too. He had weekly hydrotherapy at a pool with physiotherapists at PMH for about 6 months
Muscle / Tendon Transfer
At about 8 months of age Jetson was assessed by an orthopaedic shoulder specialist for his suitability for a tendon transfer to enable him to bend his elbow. Such an operation will not be tried until he is a little older, but with his current level of shoulder strength and stability, he appears to be a good candidate for the operation in due time. Just before turning 4, Jetson underwent surgery to move the gracilis muscle from his left leg to his right arm in order to give him some elbow flexion. Unfortunately during the surgery the donor muscle was found to be unsuitable, and the transfer was aborted. A later MRI scan showed the absence of a gracilis muscle. The MRI showed a good pectoralis muscle group that could be suitable for muscle transfer, though we are now waiting for later before we decide which option to take. He also has good forearm musculature that could be used to increase his elbow flexion
In June 2011 (at 19 months) Jetson was given a walking frame to try. He loved it, and it really help with developing his walking skills. He was walking by age 2, and once on his feet there has been no stopping him.
This is only the beginning of the treatment of Jetson. He has progressed fantastically since birth. The first year of his life is the best time to mould his malleable bones and joints, and there is much more to go.