Brooke was born on July 7th, 2001. At 4 months old , intuition told me something was not quite right.
At 6 months old, I noticed that her back was curved slightly. My father and her father both agreed.
I called the pediatrician and was seen the next day. At the appointment, we asked about scoliosis. We were told no, but to ease our minds an x-ray was taken. They called later that day to say that Brooke indeed, had scoliosis. At the time her curve was measured at 27 degrees low thoracic, and 20 lumbar.
We were told then to see a specialist. We did, at our local Children’s Hospital. This hospital insisted on doing more x-rays of their own. These films were unnecessary, and revealed the same measurements as before.
The doc looked at her back, and suggested that we return for a follow up in 5 months. That seemed unreasonable, but at that time I didn’t know too much about scoliosis..
Within a couple months it was obvious to us, that the curves were progressing.
I called to set up an earlier appointment. She was 9 months old, and not able to completely sit up unassisted.
Another doctor in this hospital ruled out congenital abnormalities, after an x-ray was taken of her head and neck area. No structural abnormalities were found.
More x-rays revealed that Brooke’s curve had progressed to 37 degree low thoracic and 30 degree lumbar, in a couple months. At this time they suggested we get a brace. We could get one at the hospital which was 2 hrs away, or we could contact our local orthotist. We chose the latter, which was also a mistake. They insisted on more x-rays.
The 2nd doctor from our local children’s hospital never recommended a follow up appointment to make sure brace was adequate.
She was placed in her first brace close to her first birthday. They were neglectful on directions, care and tightness of this TLSO Brace.
The brace was not adequate, and they felt that it was not holding her. It was taken to numerous places for adjustments, but never fit well. It was worn 23 hrs a day.
This is when my research began. I joined numerous internet support groups, in effort to learn more.
I told Brooke’s Story and was contacted by Heather. We talked about the ineffectiveness of bracing these small infants/children. Heather recommended casting as a way to maintain Brooke’s curve.
We had Brooke in physical therapy at the time because she still could not sit or stand unassisted. I showed our physical therapist’s Brooke’s x-rays, and they suggested we look into a scoliosis clinic in the same hospital The doctor there suggested an x-ray of Brooke in her brace to make sure it was holding her, and it wasn’t.. She was then measured without the brace and this revealed that her true curves were 55 degrees low thoracic, and 45 lumbar.
I knew as a mother that I needed to act fast. I wanted another opinion, so I made yet another appt at another reputable children’s hospital in Pittsburgh, PA. This doc took more x-rays with and without the brace. He felt that I was not putting the brace on tight enough, so he tightened the brace and measured her at 25 degrees. He also stated that he was not impressed with this particular brace. He said that her scoliosis would progress with her growth, and that we should just “wait and see.”
In Jan 2002, we had an appt with the Shriners in PA. They made a new brace for her in 2 weeks. They also predicted cast’s, and a halo in her future before surgery in effort to maintain her curves and prolong surgery for as long as we could.
A follow up appt with the Shriners in Erie PA. was made in a month. The doc thought the brace was effective, and wanted to see Brooke again in 3 months.
Before her next appt., I was contacted again by Heather. She informed me of her recent connection with Dr. Mehta. She sent me the video, “A New Direction.”
Upon watching the video, I knew that I needed to give serial corrective plaster casts some consideration. No one had ever given us any hope before. WAS THIS FOR REAL?
I immediately presented the video to her doctors at the Shriners. Her doctor watched it and called me back. He said that he was fond of Dr. Mehta’s work, and that he was willing to put a plaster cast on Brooke, if that’s what we desired!
Although, at our next appt. her curves were measured 10 degrees lower. We were so happy! We just knew her curves were going to get better at that point. We were given a little hope, and we ran with it. But, in the back of my mind, the video continued to replay.
Meanwhile, Tawney, (Tyler’s Mom) called to inform me of his wonderful progress in his first cast..
I was excited for her, but was also confident that Brooke was getting better, so why torture her during the summer in a cast? Not to mention, she was in aquatic therapy and loving it.. I knew it was benefiting her at the time, and her doctor agreed.
An appt was made in 6 months, but that was not soon enough. The brace wasn’t fitting well, and we needed another approach.. We were seen again in 4 months, and it was decided that the brace was not holding.
I knew then that it was time for a cast. Her doctor agreed, and Brooke’s first plaster cast was applied 2 weeks later, at age 2yrs and 4 months old.
We were admitted to the hospital on November 4, 2003, the night before her first cast was applied. She was measured at a 47 low thoracic, and 43 lumbar. .In the cast, she was measured at 17 degree low thoracic, and 5 degree lumbar.
We went home that evening. We were so exhausted.
Unfortunately, Brooke was reacting to anesthesia, and then developed bronchial asthma. Needless to say, the first 2 weeks were quite difficult.. Although, we knew most of her discomfort was due to the asthma.
Within a couple weeks she had completely adjusted to her new cast.
Our follow up appt. was one month later, and the standing x-ray revealed that she had settled to 25 degrees, in the cast.
We had to schedule an earlier appt, because she had grown so much in a couple months. The cast was sawn off, and her 2nd cast was applied. Her doctor was able to get her down to 12 degrees in this new cast!
She adjusted to this new cast even quicker than the last.
We are now scheduled to go back at the end of March.
I would like to give special thanks to Dr. Min Mehta for dedicating her life’s work to the treatment of our children.
I would like to thank Dr. James Sanders for applying the casts when no one else would.
I would like to thank Heather Hyatt and The Infantile Scoliosis Outreach Program for giving me the educational material I needed to make the best choices for my daughter Brooke.
My daughter’s curve correction would not have been possible without the dedication of these people, and for that I am eternally grateful.
Thank you for reading our story, and feel free to contact me with any questions regarding Brooke’s care.
I’ll keep you all posted.