When we walk by a stranger in the grocery store or in public, Camden will be the first to try to talk to a stranger or someone will lay their eyes on him and fall in love. He has such an outgoing personality but no one would ever know the things that that “sweet face” or “very happy boy” has been throughout his journey with Progressive Infantile Scoliosis.
Camden was born on September 5, 2012. He weighed 9 pounds exactly and he was perfect. He was a big baby for such a small mommy, which we weren’t expecting at ALL. In December of 2012 my Grandma brought to my attention that Camden’s spine felt curved, and he would lean to his right. His ribs were also protruding on one side. I didn’t think much of it because every mom thinks her child is perfect. At Camden’s 4-month check-up we mentioned something to his pediatrician; she took a look at him and ordered an x-ray immediately. We took him the next day to have the X-ray at Children’s Healthcare of Atlanta. I asked to see the X-ray after it was taken and I knew soon after looking at it, something was wrong with my “perfect” child.
Camden’s pediatrician confirmed my worst fear, he had scoliosis and his curve was 31 degrees. She referred us to a local Pediatric Orthopedic Surgeon to examine Camden and review the X-Ray. The following week we visited the Pediatric Orthopedic Surgeon where I just wanted closure to this; I didn’t want him to tell me anything was wrong. As they took us back I noticed there weren’t many people in the office, I can’t describe it…it was just eerie. The doctor came in and had already reviewed the X-ray. He examined Camden, and told us that Camden had a 23 degree angle and that he believed it was his posture. He thought that Camden would grow out of it, to do a few stretches with him a few times a day and to come back in 3 months to see if it had gotten any worse. If it had indeed gotten any worse they would have to put him in a brace so he could grow straight for a few months. So I, a young mom who again thought nothing was wrong with my child and all of the people around me were crazy for saying this… believed him. I was so happy to go home with decent news and that he wouldn’t have to have surgery or anything of that magnitude. My mom did not believe him and insisted he was wrong. I told her to stop being negative, but she was adamant.
All I have to say is, Thank God for my mom! I honestly don’t know where Camden would be in this without her. She had already done some research prior to the appointment and found Heather Hyatt Montoya and Shriner’s Children’s Hospital in Greenville South Carolina. We scheduled an appointment with a Pediatric Orthopedic Surgeon at Shriner’s for a second opinion and I was not looking forward to it, at all. I read the stories on infantilescoliosis.org and they sounded so much like Camden. I didn’t want to face the reality that something could be wrong.
The Pediatric Orthopedic Surgeon at Shriner’s read the X-ray. He said Camden’s curve was 33 degrees with an RVAD of 35 and wanted another X-ray in 6 weeks to confirm or deny that the curve was “Progressive”. He stated that with an RVAD of 35, it was most likely “Progressive” as per Dr. Min Mehta’s study.
The MRI was completed before the next X-ray at Shriner’s and nothing was abnormal (no underlying cause for the scoliosis) with Camden’s spine! Great news!
The longest 6 weeks of my life passed, and we were ready to visit Shriner’s again. His curve had progressed to a 44 degree angle, 11 degrees in 6 weeks! I was shocked! He indeed had Progressive Infantile Scoliosis. Camden was placed in a Mehta cast a few weeks later, on April 11, 2013. Camden was only 7 months old, at that time he the youngest infant his Pediatric Orthopedic Surgeon had ever casted. It was so hard to watch my baby go through that, but the alternative (surgery, traction etc.) would have been much worse.
Camden was casted every 8-10 weeks with no break. At Camden’s 7th casting appointment his doctor examined him and said he was ordering an X-ray to be done at his next preop. Keep in mind, his Pediatric Orthopedic Surgeon will NOT X-ray unless he sees no visible signs of the scoliosis due to the overexposure of radiation to such a little body. This was HUGE!!!
On July 2, 2014 Camden had a standing X-ray out of cast. HIS SPINE WAS STRAIGHT! The following day he was placed in his 8th cast for 4 weeks then he will be molded for a removable brace that he will wear 22 out of 24 hours per day to maintain his straight spine. We can see light at the end of the tunnel; our journey was nearing an end.
At Camden’s checkup with his Pediatrician, we ask how many cases of Progressive Infantile Scoliosis they have seen. The response was “None, he is the first one we’ve seen in our practice. We’ve seen it in older children, but never a baby”.
At one Camden’s preop visits with his Pediatric Orthopedic Surgeon, a statement was made that struck me….A baby grows half their height by the time they are two, it takes another 15 (+/-) years to grow the other half. If a baby has Progressive Infantile Scoliosis, the most crucial time would likely be in the first two years of life, during the fastest growing stage.
Awareness, education and early detection are key to saving our baby’s spines.
Thank you Heather for all you do!
