Look at that sweet smile! I first learned about Teresa's story through my support group through ISOP.
Read Teresa's story written by her mom, Valerie.
Teresa's Story
Teresa was born in August 2006 weighing 9lb 8oz, the second largest of her five siblings (who are all boys!). Shortly after birth, she began to have frequent spitting-up episodes and was diagnosed with mild laryngomalacia (partial airway collapse) associated with this reflux. Her pediatrician suggested that we keep her in an upright position and that sleeping in her infant carseat/carrier was a good idea. Teresa slept semi-upright in her infant carseat for all naps and at night, from age 0-9 months. Whenever we would try to take her out of her carseat to sleep, she would sleep horribly and cry a lot, so we would go back to letting her sleep in the carseat. She was actually a great sleeper and a very healthy, happy and content baby. Developmentally, she was “on schedule”. She rolled over (both ways) at age 3 months and sat up unassisted at age 6 months. Instead of crawling, Teresa shuffled on her bottom to get around, which we thought was unique and cute! (We would later question this and now assume it was somehow associated with her scoliosis.)
At age 8 months, I noticed two “bumps” on Teresa’s left front ribcage. When I asked her pediatrician, he said they were probably “just slightly deformed ribs” and he would “watch” them as she grew. At her 9-month check-up, though, I mentioned to him that her back seemed to have a “bump”, too. He looked at her spine and suspected that she had scoliosis of the spine. She was x-rayed later that day while being held in an upright “standing” position (even though she really wasn’t bearing weight on her own yet). We would have to wait a few days to get the results back. I had never noticed a curve in her spine, but when I got home, I saw her sitting up without a shirt on, and I immediately noticed the severe curve. I couldn’t believe it! I was very upset and worried. Believing that the “carseat sleeping” had something to do with her developing this curve, we took her out of the carseat and laid her “flat” for all sleeping.
I immediately began researching “baby scoliosis” on the internet and learned that although infantile scoliosis is very rare, in 80-90 percent of the cases, the curve is 25 degrees or less and self-resolves without any treatment at all. With this information, plus our prayers and faith in the Lord, I was confident that the x-rays would show Teresa’s curve was minor.
A few days later, we found out that her curve was actually 45 degrees, with a 21 degree rotation. I almost didn’t believe the doctor when he told me! He said that 45 degrees is “very significant” and Teresa would need to see a pediatric orthopedic surgeon. I was sort of in shock and I spent the next couple of days going from being fearful to being “at peace”.
I went onto the internet again and did more research on babies with significant scoliosis curves. I learned that 45 degrees indicates that the curve will more than likely not resolve on it’s own, but instead require some form of treatment. Current “conventional” treatment consists of years of plastic braces, followed by surgery to implant metal rods in the child’s back to straighten it. Of course, this was shocking and very frightening for me to imagine.
While researching, I also learned about an early treatment procedure using several corrective plaster casts applied to the torso of the child. The casts gently support the spine in a straight and de-rotated position as the young child grows, possibly removing any need for future surgery. This sounded like a great alternative to us, and Teresa was found to be a good candidate for this procedure. Her first cast was scheduled 2 days after her 1st birthday at a Shriners Hospital.
In the mean time, Teresa had an MRI and neurological exam, which ruled out any congenital deformities and abnormalities. She also had an appointment/x-rays with a local pediatric orthopedic surgeon (as a “second opinion” to the Shriners doctor). These x-rays were taken with her lying down and showed her curve at only 27 degrees. The doctor told us that plastic bracing and future rod surgery was the only option for little Teresa. When I asked him about the serial casting option, he actually hadn’t even heard of it! I was perplexed, as this procedure had been published in medical journals and was showing great success in permanently correcting infantile scoliosis without any invasive surgeries. I learned that because it was a newer form of treatment, and because infantile scoliosis is so rare, many doctors were simply unaware of this treatment. (Thankfully, the positive results over the last few years are beginning to get the attention of more doctors.)
A month later, at her appointment at the Shriners Hospital, she had a 3rd set of x-rays taken (again, laying down). The doctor measured her curve at 21 degrees and said her rotation was “almost 0”. He said her spine appeared to be very flexible and he was “very sure” that her curve would self-resolve without any treatment at all. Her first cast was cancelled and periodic x-rays to monitor the curve were recommended.
Over the next year, 3 x-rays were taken of Teresa’s spine. They all showed her curve to be staying about the same. This put Teresa in a sort of “gray area”, as the curve wasn’t progressing, but it also wasn’t showing signs of resolving, either.
We decided to see another orthopedic surgeon who had recently begun applying the special casts. He took 2 more x-rays, 5 months apart, and determined that her curve and rotation were slowly progressing and would not resolve without some type of treatment. Even though she was almost 3 years old and approaching the end of the “4-year ideal window” for casting, he recommended she start a casting program right away.
Teresa received her first Mehta-style cast a few days after Christmas at 3 years 4 months old. X-rays taken standing up in cast #1 showed her curve reduced to 23 degrees (from 36 degrees) and the spine’s rotation reduced to almost none.
After 2 months in cast #1 and immediately following it’s removal, cast #2 was applied. X-rays showed her curve further reduced to 14 degrees with no rotation (this x-ray was taken in the OR, laying down, in cast).
After 3 months in cast #2, cast #3 was applied and her curve showed further reduction to 10 degrees with no rotation (again, this x-ray was taken in the OR, laying down, in cast).
Teresa stayed in cast #3 for 2 months, at which time she was put into a plastic brace that had been molded in the exact style as the casts. It was actually molded at the same time as cast #3 was applied. The bracing option was suggested as a temporary treatment, which would allow her to remove the brace so she could swim during the hot summer (with her brothers!).
At this time (6 months after cast #3 was removed and she was given the brace) she is, unfortunately, still in this “summer brace”. We are actively seeking having cast #4 applied as soon as possible, as Teresa is now 4 years 5 months old. Unfortunately, the doctor who applied her casts is “between hospital contracts” and unsure when/where/if he will be returning to our local area. Because of this, we have decided, once again, to seek the advice of a “casting doctor” at the Shriners Hospital for Children.
Teresa continues to be a happy, very energetic, and active little girl. Although this journey has at times been difficult, our faith is in the Lord. We know that His ways are not our ways, His plans are not to harm us, He works to bring about what is good, and we can do all things through Christ who strengthens us! God bless you and your little ones.
Pre-casting: Cobb 36 degrees/RVAD 24 degrees (standing)
Cast #1: Cobb 17/Rotation 0 (laying); Cobb 23 (standing)
Cast #2: Cobb 14/Rotation 0 (laying)
Cast #3: Cobb 10/Rotation 0 (laying)
If you should have any questions regarding Teresa's story you can contact Valerie at vanddcharron@yahoo.com
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