Our beautiful, strong, amazing daughter, Adelyn was born on September 2, 2009. I had been told since the age of 16 that I would be unable to have children, so to say we were excited was an understatement. When Adelyn was almost six months old, she bent over to pick up a toy after her bath. I thought to myself that her spine appeared to be curving to the left, but I have a tendency to be the over analytical mom so I did not say anything. Her six month checkup was scheduled for the next week, I watched the doctor trace her fingers up Adelyn’s spine and there was no mention of a curve. Adelyn had, and still has, an internal hemangioma at the base of her spine and skull.
We were referred to a neurologist and I asked him to look at her back. He traced her spine and immediately said she had a curve. Adelyn had an MRI and a x-ray panel at our local hospital which confirmed she had a 33 degree curve with rotation.
At the time, I was a service coordinator for First Steps and was fortunate enough to have a wonderful little boy on my caseload that also had infantile scoliosis. I knew the family was being treated by the Shriner’s in Chicago and proceeded to find a sponsor for Adelyn. I joined a support group and was spotted by the family that I worked with. It seems that some roads are paved far in advance and some paths are meant to cross. I talked with Catie and she contacted Linda at the Shiner’s on Adelyn’s behalf. The following Friday we were in Chicago. We met with Dr. Sturm and his staff on April 23, 2010. I am eternally grateful to Catie and Will, without them I don’t know how Adelyn’s story would be told today.
The staff at the hospital were very friendly and welcoming. I knew right away that they would take care of my baby girl. After reviewing the x-rays from our local hospital, Dr. Sturm measured her at 30 degrees and her RVAD at 25. He recommended that we wait a couple of months since she was so little and her curve was teetering on the borderline. The original x-ray was completed while she was under anesthesia and lying down. Dr. Sturm said this could affect the results and requested another x-ray. When everyone came back in the room I could see the news was not good. While in sitting, Adelyn’s curve was at 40 degrees and her RVAD at 36. Dr. Sturm recommended that we set a date for casting.
On June 8, 2010, Adelyn received her first cast at nine months old. It was one of the most difficult days of my life. I tried to prepare myself for what the day would hold but it is something that you must experience to truly understand. Adelyn did wonderful waiting to go into the OR and was her happy, bubbly self. They took us to the surgery prep room and gave her some medication to make her sleepy so she would not to remember the procedure. A few minutes later they came and carried my baby away. My heart broke but I knew we had to do it to give her the best possible chance for the future. After what seemed like forever, Dr. Sturm came to talk with us and said she had done well. He got her close to neutral in cast. A short time later, I heard a familiar cry from the back, and they said she would be brought out soon. In the hospital room I was greeted with a swollen, nearly unrecognizable, screaming girl. I held her in my arms the very best I could with her new cast. Gwen, super nurse, taped up the cast with Adelyn fighting at every turn. Once Adelyn’s cast was taped and padded she stopped crying and was beginning to laugh and coo. We left the hospital and our new life began.
Life in cast took some adjustment but Adelyn’s never ending smiles made it so much easier. She bounced back to her normal self very quickly, it took more time for John and I adjust. We washed her hair in the sink and gave her sponge baths. Adelyn was unable to crawl prior to her cast and scooted around on her bottom. She received physical therapy to help her build strength and new skills. Before we knew it eight weeks had passed and we were ready for a week of squishy hugs. We cut the cast off at home and celebrated with a bath in the tub for the first time in two months.
In October we went back for Adelyn’s third cast. There were no issues 0r concerns prior to casting. When Dr. Sturm came out to talk to us, he had a strange look on his face and reported that she remained at 20 out of cast and was neutral in cast. He then told us there were some complications and the anesthesiologist would be coming to talk with us. Adelyn was still in recovery and would be there for a while longer. The anesthesiologist told us that when she was given the anesthesia, her oxygen level dropped to dangerous levels. They had difficulty getting her oxygen level back up and almost lost her. My 13 month old ray of light almost lost her life to scoliosis. We were told that she would be unable to be casted again until she was seen by a pulmonologist. We had her first visit with the pulmonologist in November. She had to take her out of the cast so the tests could be performed. During this time she began having difficulty with keeping food down and was not gaining weight. Adelyn was
diagnosed with Restrictive Airway Disease, Reflux, and Aspirations due to her
contorted anatomy. She was started on a regimen of daily breathing treatments, it was unclear if or when Adelyn would be able to be casted again.
I kept in contact with the Shriner’s regarding Adelyn’s status and it was decided that she would receive a brace to help maintain the progress she had made. In February 2011 we returned to Chicago and met with Dr. Hammerburg. Adelyn had her first x-ray since being out of cast for three and a half months. I got to look at the x-ray and tears came to my eyes, her back looked straight! I tried not to get my hopes up, since I am not a trained professional but she looked straight. Dr. Hammerburg looked at the x-rays and said she was down to 13 degrees. She had correction and maintained it while out of cast!
I have never felt so happy and blessed. Adelyn was molded for her new brace which we received several weeks later. She was released to be casted again in April and we returned to Chicago to make plans for the future. At that appointment we received the greatest news possible, her back was straight! Adelyn had correction in the brace and her back was straight. Dr. Hammerburg recommended to continue with the bracing since she was doing so well.
Adelyn will be three years old in September 2012 and has been in brace since February 2011. She wears her brace for 12 hours a day during the night while sleeping. Adelyn is an amazing little girl with more strength, perseverance, and courage than most adults I know. Throughout this journey, she has never lost that spark and has never let the cast or brace stop her. She is my Superhero, my inspiration and I am blessed to be the mother of such a wonderful girl!Adelyn's Story was submitted by my dear friend and William's former case worker, Shirley! I met Shirley when Adelyn was an infant. Shirley was assigned as our case worker with First Steps of Indiana shortly after returning from maternity leave. I remember our first meeting as she asked questions about William's condition and treatment. A few months later I noticed a post on a support forum from Shirley in our hometown in Indiana. I immediately emailed her and said are you my Shirley? She is a constant professional and refused to break confidentiality to contact me directly. Fate brought her into our lives when we needed her most and fate allowed me to repay her kindness! We love you girl! HOPE lives!
Adelyn and William at the Lighthouse Parade, Spreading HOPE! Baby Ian will be big enough to ride next year!
Tags: Dr. Kim Hammerberg, Dr. Peter Sturm, Embrace It-Bracing after cast, Infantile Scoliosis, Lucky Cast Club, Mehta Casting, Progressive Infantile Scoliosis, Scoliosis Awareness Month, Serial Derotational Casting, Shriners Hospital for Children Chicago