After two years of extensive research, I was finally able to locate the only person on the planet willing and able to help my child. Unfortunately, he lives in France. Luckily, I made contact with him before he retired in June 2000. His recommendation was for a procedure considered experimental, and not commonly practiced in the U.S. It consists of halo traction, a specialized, two-piece, adjustable plaster cast with turnbuckles, and Bi-Pap breathing exercises. The combination procedure was performed on October 2, 2000 on 2 ½ year old Olivia & 3 1/2 yr old Breann at the Shriners Hospital in Salt Lake City, Utah.
This traction therapy/experimental procedure took three months. So far, we are extremely happy with the results. Olivia entered the hospital with a 96º thoracic curve. One month later, the curve was at 45º. The goal now is to maintain the curve, she is currently in a plastic brace with neck support. it’s a lot of hardware, but it allows removal once a day for the skin to breathe, and the alternative exercises we’ve chosen to stretch & straighten her spine, i.e. inversion table, hanging rigs, pilates, yoga and more. Details on these and other disciplines will follow, but it’s important to note now that they strengthen muscles that are not used while in a Risser Cast the other 9-11 months of the year. My research indicates Olivia’s curve will revert back to 96º within 1 ½ -3 years if alternative solutions are not found. Bracing without neck support has proven to be of no significant benefit for this type (thoracic) infantile scoliosis and certainly not at Olivia’s age.
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Chronological History
Following Olivia’s birth, an intern who examined her heard a clicking in her left hip and asked seven other doctors to examine her. They all concurred there was nothing wrong with her hip and refused my request to give her an x-ray. They stated they don’t expose newborns to unnecessary radiation. Five months later, while giving Olivia a back massage, I noticed that the left side of her back seemed to be a little more muscular than the right. I immediately took her back to the hospital where she was delivered. They intimated that she was lazy and only wanted to use one side of her body, therefore, we should move all activities to the opposite side of the room to make her use those other muscles. This was tried for a few wasted hours. She had always used both sides of her body and I didn’t believe the diagnosis. Instead, I took her to Children’s Hospital in Denver where they took x-rays and immediately diagnosed Infantile Scoliosis. At this time her thoracic curve was measured at 39º.
At my insistence, an x-ray was taken of her hips and it was determined her left hip had been subluxed since birth thus favoring (but still using) the one side. Her hip was reset and she was placed in a spica cast for one month.
This was followed by a hip brace for three months (while the spine continued to curve), but I was told the hip must be aligned first, then the TLSO brace worn in order to attempt correction or at least maintenance of the spine. She was then fit for a TLSO brace that was unsuccessful in maintaining her curve. This meant continued deterioration and ultimate fusion of her spine before her torso would be fully-grown. It meant certain lifelong deformity with severe respiratory problems.
Frustrated with the doctor’s inaction to stop this progressive curvature of the spine, my research on Infantile Scoliosis began. I took Olivia to at least 20 Orthopedic doctors who’s specialty was Scoliosis in our state (Colorado). All of them agreed with the diagnosis and treatment except for one doctor who said that Olivia needed serial corrective plaster casts. She indicated that this treatment probably wouldn’t be available to us in the U.S. because doctors here consider this practice archaic and ineffective.
I began sending Olivia’s x-rays to most major Children’s Hospitals in the U.S.
I then began sending them abroad to France, England, Scotland and Holland. I either received no response from the U.S. doctors or their response was to advise me to keep Olivia in the TLSO brace and “hope for the best.” All the doctors abroad agreed that bracing without neck support has not been shown to be of significant benefit for this type (thoracic) infantile scoliosis, and certainly not for a child Olivia’s age.
I presented this information to all of her Colorado doctors and they insisted that serial corrective plaster casts were ineffective, barbaric and an archaic practice. I then made the decision to raise money to live in France where I knew of a doctor who could help us. I was determined to speak to him personally. Fortunately, I was able to obtain his home address and immediately began sending the x-rays and medical information to him. He called me at home and once again confirmed that Olivia needed serial corrective plaster casts with neck support. Again, her Colorado doctors didn’t agree with this recommendation.
Olivia’s Colorado doctor at this time was planning a trip to France for a spinal convention and was able to confer with this French doctor about the right course of treatment. Upon his return, his mind was changed.
I then re-contacted a doctor at the Shriners Hospital in Salt Lake City with whom I had been corresponding all along. He informed me that this French doctor would be in Salt Lake City in June 2000 before he retired and that he would try to set up an appointment for Olivia. We met him at Shriners where he examined her and conferred with the doctors at Shriners, who agreed to treat her, per his recommendations.
The other recipient of this procedure, also a Coloradoan, 3 1/2 year old Breann, curve has improvement from 69 degrees to 28 degrees.
The above successful results occurred because Dr. Jacques D’Astous was willing and committed to try a therapy not commonly done within the U.S. There ARE alternative solutions besides fusion for this type of scoliosis in the U.S., and he alone was able to provide one. We are eternally grateful and indebted.
October 2003 Update
I am sorry for not having updated this site sooner.
Much has happened since the last update. Like my introduction to orthopaedic spinal surgeon, Dr. Min Mehta.
Through my relationship with the Scoliosis Association in the United Kingdom, ( S.A.U.K.), I was introduced to Dr. Mehta who has successfully treated a large number of infants with progressive infantile scoliosis using serial corrective plaster casts.
Dr. Mehta does NOT “wait and see,” how large the curvature is going to increase before applying a cast, but rather applies the cast immediately after completion of necessary exams to confirm the diagnosis of a progressive scoliosis.
This immediate approach to treatment has resulted in successfully straightening the spines of numerous infants and young children. She has followed the progress of her patients for over 10 years, and has found they continue to remain straight.
I have a video produced by Dr. Mehta, her foundation ARISE, U.K. and the parents of children whos spines have been improved or completely corrected.
If you would like a copy of this tape, please contact me at, heather@abilityconnectioncolorado.org/newsite/infantilescoliosis.com. All proceeds go to ARISE, U.K.
The first Infantile Scoliosis Outreach Program ( ISOP), in America is now officially being developed. “My relationship with Ability Connection Colorado now gives ISOP the opportunity to fundraise. I will keep you aprised of events on a regular basis.”
Thanks for your emotional support in the past, and I look forward to our continued communication through the new list serve, “C.A.S.T.” , (Casts As an Alternative for Scoliosis Treatment), e-mail, and telephone.
Now, for an update on Olivia.
On September 25, 2003 Dr. D’Astous applied her “winter,” cast. She was able to spend the entire summer in a removable brace, which made for a great summer!! She continues aquatic therapy during “cast-off,” time, and exercises everyday.
Her thoracic curve is currently around 67 degrees. A far more livable degree than 96 , which is where the curve was exactly three years ago!!!!!!!
We are all very grateful and happy with her progress, and will continue our research into the future.
Sincerely.
Olivia’s Mom
Olivia’s Update – November, 2006
In an effort to maintain her severe curves, Olivia wore casts and braces until she was eight years old. At that time, her doctors determined casting/bracing would no longer be enough help for her tenacious curves, and recommended a more aggressive care plan. Because her largest curve had returned to 100+ degrees, it was determined that halo traction would, once again, be her best option. Olivia was placed into her second halo on January 15, 2006, and was hospitalized for about two months. Her first halo, in 2000, bought her six years of precious growing time, so we were looking forward to the second episode of non-surgical correction she was likely to achieve with the halo. In further support of the halo traction procedure, we had recently discovered and researched a new surgical procedure for which halo placement was a prerequisite. If Olivia was to qualify for this new procedure, the halo would first have to decrease her curves enough to make the procedure viable.
This new procedure, called the dual-hybrid version of the Vertical Expandable Prosthetic Titanium Rib (VEPTR), had only recently been developed by an orthopaedic surgeon in Salt Lake City, UT. The dual-hybrid VEPTR is a surgical procedure that consists of two rods that are made of titanium, are adjustable, and are placed on the outside of the ribcage. They are attached to a set of top ribs and to the pelvic structure on the iliac crests.
It is intended to be a temporary option, to help Olivia maintain her current degree of 60, until she reaches skeletal maturity. At that time, the devices will be removed prior to her definitive procedure. The hybrid is considered internal splintage, and must be adjusted surgically as the child grows, approximately every six months. We decided to pursue this new option for many reasons. First, it was recommended by our trusted orthopaedic surgeon. Second, the implanted hardware doesn’t touch the spine directly.
Olivia’s initial implantation surgery took about an hour, and recovery took about a month. It was a very difficult process, but the result was worth every minute of pain! Olivia had grown four inches by the time both procedures were completed. We had to go shopping for a whole new wardrobe! In early September 2006, Olivia underwent her first hardware expansion—a minimally invasive procedure from which she recovered quickly.
All in all, we are very pleased with Olivia’s progress. She is living a new life after undergoing these procedures. She attends school full-time, and does everything a typical kid does. She is a really fast runner, and she is in her fourth year of piano lessons. She is in the process of picking out her annual piano recital piece, and will probably choose a song composed by Alicia Keyes (her favorite artist).
Please feel free to e-mail me directly at heather@abilityconnectioncolorado.org/newsite/infantilescoliosis if you have any questions about the halo, the VEPTR hybrid, early treatment, or Olivia’s piano recital!
Sincerely,
Heather
