Hadley was born in May 2007. She was born perfectly healthy. Around the age of 5 months, I (mom) saw that one side of Hadley’s ribs were bulging out. I showed my husband, and he thought she just had more muscle strength on that side from learning to sit. Hadley’s head also tilted to one side, and we were told she had torticollis. We were not overly concerned with this diagnosis, since our other daughter also had this. At Hadley’s 6 month appt., my husband thought we should show the doctor Hadley’s back to make sure everything was normal. The doctor looked at it and agreed that Hadley’s ribs were bulging out on one side and she referred us to the local Children’s Hospital.
At 6 ½ months we got Hadley into the Children’s Hospital to see a pediatric orthopedic surgeon. They took an X-ray and that day Hadley was diagnosed with idiopathic infantile scoliosis with a 30 degree curve. The doctor explained to us that most children’s spine’s will straighten up on their own, but there is a percentage of children who have progressive scoliosis. He said he wanted to wait 3 months to see what Hadley’s back was going to do. Not knowing anything about scoliosis, my husband and I agreed to this.
3 months passed and we went back to get more X-rays of Hadley’s back. They looked horrible! Hadley (now age 9 months) had a 55 degree curve. That day she was fitted to get a Kalibus brace. We thought that this brace would correct Hadley’s back within a year or so and scoliosis would be out of our lives forever. At 10 months, Hadley finally got her brace. She had to wear it 24 hrs a day. The only reason we got to take it off was for bath time. Once Hadley got her brace, I decided to do some research on it. I was desperate to find any information on this brace. Unfortunately, I could not find any published research that could prove that bracing could correct scoliosis in an infant. But after praying and searching, I came across the, “Infantile Scoliosis Outreach Program” (ISOP) website. I searched the site high and low for kids using braces, but I could not find any. I saw however, that many of the children on this site were in casts. Even though Hadley was in a brace, I decided to join the “CAST Support Group” because I was desperate for any information or anybody to talk to who knew what we were dealing with. Once I started talking to people on the site, I stumbled across other parents that had personal experience with Early Treatment with EDF (elongation, derotation, flexion) casting, bracing, and other treatment modalities.
People on the “CAST Support Group” welcomed me nicely and showed interest in my situation. I was starting to hear that a lot of their situations sounded similar to ours. They informed me of a new procedure called Early Treatment EDF Casting, which was to try and correct a child’s spine, not just hold it. I was never told that Hadleys brace would not correct her spine. I started to get scared and talked to my husband about what I was hearing. He called Hadley’s orthopedic nurse to clarify the purpose of the brace. Turns out, everything I was hearing on the CAST Support Group was right. A brace was not going to correct Hadley’s back, it was only an attempt to hold it until she is old enough to have surgery! We were told by the nurse that hopefully that wouldn’t be until maybe age 12 or 13; whenever she hits puberty. We were shocked and devastated! This is the last thing we would want for our child. Ineffective bracing until premature surgery! People on the support group informed me of the nearest Early Treatment Center of Excellence, which is the Shriners Hospital for Children in Chicago. So, I immediately called them to try to get Hadley an appt. I was told we had to fill out an application and that it takes approximately 3 weeks to get accepted. Thankfully for God’s guidance and the Cast Support Group, I was able to get advice on how to navigate through the frustrating medical system and we were able to get Hadley an appointment for the following week.
At 11 Months old, we took Hadley to the Shriners in Chicago for a 2nd opinion. This is when we found out Hadley’s back had progressed to 74 degrees while wearing the brace! My research indicated that internal organs could be compromised at approximately 75 degrees, depending on the child…. It was God’s control that led us to the right place before Hadley had permanent damage. The surgeon strongly recommended getting Hadley casted the next day. We agreed to it. We spent the night in the hotel in fear, yet still had hope for Hadley’s back.
The next day, we arrived at the hospital at 6 a.m. to get Hadley casted. We were very scared to have our little baby anesthetized, but knew this is what was best for her. 45 minutes after Hadley was in the operating room, the surgeon came out to inform us that Hadley did very well and was waking up in the recovery room. With the correct casting frame and a solid understanding on the principles of the Early Treatment Process, he was able to get her spine down to a 17 degree curve in her first EDF cast, which was remarkable. We are even more hopeful because Hadley is so flexible. It took a little while to adjust to the cast, but Hadley did very well. I thought not being able to bathe her and let her play in the sand and water would be pure torture, but it wasn’t. She didn’t seem to mind at all. The cast became a part of her life and she is passing all milestones on time.
We were informed that any child with a curve over 50 degrees will more than likely end up needing surgery in the long run, but we are very hopeful. In the back of my head I have always thought, if we had just found a surgeon trained in this gentle, corrective method from the beginning, the chances of Hadley being corrected completely and permanently from the cast would have been so much greater. However, the first doctor that saw my daughter practiced the “wait and see” approach to treatment and in that time her spine progressed 50 degrees! I am just so thankful to have found ISOP when we did, before her spine got any worse.
After 4 weeks of Hadley being in her cast, we went back to Chicago for a follow up appointment. Her X-ray showed that Hadley s spine was at 27 degrees (in cast). It had relaxed a bit, but that’s normal. Then after 2 ½ months of being in that cast, we went back to get it removed and had her 2nd cast reapplied. The surgeon came out to inform us of the correction achieved from the first properly applied EDF cast. He was very pleased with the correction. In Hadley’s first cast, her spine went from 74 degrees to 47 degrees (out of cast). She had 27 degrees of correction. This was phenomenal. The team at the Shriners Hospital for Children in Chicago had done wonders for our baby girl, what more could we ask for!
Hadley stayed in her 2nd cast for about 2 months and then got it changed. From her 2nd cast, she had 8 degrees of correction. We were going in the right direction. Her back was now at 39 degrees. In Hadley’s 3rd cast, she was down to 0-5 degrees(in cast) and the correction from her 3rd cast was 6 degrees. Hadley’s back is now at an miraculous 33 degrees(out of cast).
So far, with God’s help, we are beating the statistics that say anything over 50 degrees can not be corrected from a cast. We pray that Hadley’s spine will continue to get lower in degrees and eventually grow straight from the continual guidance of the EDF serial casting. We hope to avoid surgery, but if it is needed, we are so thankful for Early Treatment with EDF casting, which has the ability to buy my toddler invaluable growing time for her chest cavity until she is older for a more definitive spinal surgery.
Hadley is now in her 4th cast with a 12 degree curve(in cast). She will get her 5th in January. While in the cast, Hadley has learned to do everything any normal child could do, but maybe a little bit differently. Hadley developed a hop when she crawled in order to get places. This helped her when she crawled because she could not bend her legs at the normal crawl position. Hadley has recently learned to walk in her cast as well. It took her a little bit longer to master her balance, but she has accomplished this and is walking every where now.
We are so thankful for Dr. Mehta and ISOP with their Early Treatment Awareness Campaign. It is Dr. Mehta, ISOP, the parents on the CAST Support Group, and the pediatric orthopedic surgeons who are practicing this gentle cure that are helping to make this treatment more widely available in the U.S. and around the world. Without this casting, our toddler would have already had premature spinal fusion/hardware. We are grateful that Hadley may get to avoid repeated and invasive spinal surgeries on her growing spine. Thank you, Dr. Mehta and ISOP for sharing this life saving treatment with parents and the medical community. And Thank you, God for staying at our side and being in control of this situation. Without you, Hadley would not be able to beat the statistics saying anything above 50 degrees needs surgery and would not have been corrected 41 degrees in only 6 months!