In December of 2010, we were blessed with twin girls, Addison and Taylor. I had a perfectly normal pregnancy and the girls were born only two weeks early. I had a C-section because Taylor was breach – already causing trouble in the womb! My girls were healthy and beautiful. They tell you not to compare your twins to each other, but that’s impossible. At about 8 weeks, I noticed that Taylor was not holding her head as straight as Addison. At first her doc said she just needed to build up her muscles, but at her six month appointment she was still holding her head to the side. The pediatrician said it was probably torticollis, got an x-ray of Taylor’s neck, and sent us to PT. Her neck x-ray was fine. We started going to PT once a week to do exercises and stretching. Our wonderful therapist, Carrie, noticed immediately that Taylor’s head was uneven. She sent us to an orthotic specialist to have a scan done. Sure enough, Taylor had plagiocephaly (a flat head). This was caused by her torticollis and possibly positioning in the womb. Taylor was fitted with a pretty pink cranial remolding helmet that she wore for 23 hours a day. We continued with PT and had her head scanned every month. (She wore the helmet a total of four months)
After a while, her head got better, her neck didn’t. At about this time, I noticed that Taylor’s back looked crooked, and there was a small lump on the right side. I mentioned it to Carrie. She had heard of scoliosis causing torticollis, but not the other way around. She wasn’t sure what to think. She did know that she was unhappy with the torticollis progress. She suggested that we ask our doctor for a referral to an orthopedic surgeon to get a Botox injection in her neck muscles. This would help relax them and allow the neck exercises to work. So, the next week at the girls nine month check-up, I mentioned it to their pediatrician. He quickly made the referral for the injection. I asked him about Taylor’s back. He took a quick glance and said “scoliosis is impossible in a child her age”. I didn’t believe him for one second! We had an appointment with ortho within a few weeks, so I figured I would just address it then.
We went to Kalamazoo and meet Dr. Nowicki on September 30th, Taylor was nine months old at this point. At that appointment, I told him we were there for her torticollis, and asked if he would also look at her back. He did an extremely through exam and ordered x-rays of her spine and hips. I was right; she was crooked! He diagnosed her with progressive infantile scoliosis. The whole issue of torticollis went out the window and we focused the rest of the appointment on Taylor’s back. Her curve measured somewhere around 28 degrees. Thankfully, our ortho was educated and proactive and ordered her a
brace right away. He mentioned things like surgery, but wanted to see what the
brace would do. We were to go back in eight weeks. (By the way – we no longer
go to the pediatrician that said “scoliosis is impossible at this age”, it’s life threatening at this age!! I anonymously sent him all sorts of info on infantile scoliosis, hope he read it!)
In the meantime, I was telling a friend about Taylor’s medical adventures. Her dad happened to be a Shriner. She knew that Shriners in Chicago delt with these kinds of cases. I got the application from her and sent it in. I made an appointment to go to Shriners, though I was certain that the brace would work and I would never have to make that trip to Chicago. The ortho had ordered an MRI to rule everything else out. On our follow-up visit to the ortho, he said her MRI was normal and did an x-ray of Taylor in her brace. She was down to 17 degrees! It was working!! I was so happy to go home and call Shriners to cancel her appointment. That’s when I talked to Linda for the first time. She encouraged me to keep the appointment. She said that at this stage, braces only hold, they don’t correct. She said the best treatment was casting. She asked me to take Taylor out of her brace for 10 days prior to coming to Shriner’s so they could get an accurate x-ray and measurements. I figured I’d keep the appointment; it never hurts to get a second opinion.
I am so glad I did. As we waited for her appointment I did research on scoliosis and casting. I found lots of information; some helpful, some terrifying. I found the LCC website too, which was a lifesaver. We took Taylor out of her brace, and slowly, day by day, we could see her curve come back. It was so devastating. When we arrived at Shriner’s on January 18th 2012, Taylor was 13 months old. Her x-ray that day: 35 degrees!! I could not believe that she had gotten that bad so quick. Dr. Hammerburg talked with us about treatment options and prognosis. He said that she was the perfect candidate for casting;
she was young, had a small curve and was flexible. He wanted to cast ASAP.
Linda came in to answer any questions we had. I had done so much research at
this point, that I had known this was coming. She gave us a booklet from LCC
and told me to call Catie with any questions. Immediately when I got home I e-mailed Catie and joined LCC on Facebook. I was so overwhelmed by their support and encouragement. I felt so prepared when we went in for that first cast. Taylor’s first casting was on January 31st 2012. Dr. Hammerberg got her to ZERO DEGREES in cast! Being in a cast is hard, as anyone here will tell you. But Taylor is amazing. She walked out of Shriner’s that day as if nothing had happened. It took her a few days to get back to 100%. She was very top-heavy and would fall A LOT! So much so, that I was afraid someone would call child protective services on me because of all the bruises on her head! But she would always brush it off, after a good 30 second cry, and go back to trying to keep up with her sister.
Eight short weeks later, cast one was off. Next was the longest 7 days of my life. She looked so good the first night, but each day I could see the curve a little bit more. I was SO anxious to get back to Shriners to find out what was going on with my babies back. We went back on April 5th. The wait seemed forever, but finally Dr. H came out with news. Taylor had held at 24 degrees out of cast. I was so happy with that! He was able to get her down to 5 degrees in this cast.
Another eight weeks has flown by. This time, we let Taylor out of her cast for 10 days. We had two whole weekends of fun in the sun. We took baths every night and spent days at the beach and splash fountain. We went in on June 11th for Taylor’s third cast. This time, she held at 17 degrees out of cast. I am so amazed at how well casting is working for our daughter!! And she is such a trooper. This time when we were called into recovery to see her, she was all taped up and ready to go. She hardly cried, but she was hungry. She sat with her sister and ate a whole bowl of cheese and crackers. I asked her if she wanted to go home. She scooted off the bed, grabbed my hand and headed for the door!
Shriner’s in Chicago and the LCC Family have changed our lives. I cannot imagine what would have happened if we had stayed with just a brace. We would have missed this period of growth for Taylor. And the LCC –life savers! It’s amazing how caring and supportive complete strangers can be.Taylor's story was submitted by her brave and beautiful mommy, Amanda. Taylor and Addison are one of three sets of twins in the Lucky Cast Club!