Our daughter, Olive, was born on September 22, 2010 at 3:46pm. She was full term with no complications, aside from the umbilical cord being around her neck right as she came out of the birth canal. This was cut immediately and there were no issues following. While this was scary, we do know that the cord was not around her neck for long, as her heart rate was consistent all throughout the labor. Olive has had a very healthy childhood thus far with only a few bouts with allergies and ear infections. She has met all of her developmental milestones and is a very happy and outgoing child.
When Olive was about 3 months old we noticed that she seemed to favor leaning her head to one side, so we started propping her head up with a rolled cloth when she was sleeping in her carrier or sleep positioner. At 4 or 5 months we noticed that her back seemed to have a bit of a curve to it and we asked her pediatrician about it. We were told not to worry, that it would straighten up on it’s own.
At about 6 months, we noticed that as she was sitting up, her ribs would stick out further on one side than the other. Once again, we were told it would straighten up on it’s own, but we requested that our pediatrician refer us to an orthopedic doctor.
We got in to a doctor at Orthopedic Associates here in OKC in early August 2011. They took an x-ray of her there, but since she was not yet standing, we had a hard time getting a good look at her spine. They ended up having me “dangle” her in the air, which we now know was stretching her spine out and not giving an accurate look at the curvature. The doctor there told us that 80% of the time Infantile Scoliosis corrects on it’s own, but that he would recommend us to see an Orthopedic Surgeon in 4-6 months. We went ahead and scheduled the appointment with a surgeon at OU Children’s Hospital for December 6, 2011, wanting to get the appointment in on 2011 insurance.
At the appointment on December 6, they were able to do a standing x-ray of Olive’s back that showed her curve to be at 53 degrees. The doctor said that we needed to get her in for an MRI immediately to make sure she didn’t have any other issues causing the curvature. Barring those issues, he wanted us to start casting immediately. We were told that the casting procedure he does was not for correction of the curve, only for maintenance until they can do surgery when she is older. Needless to say, we left in a whirlwind of confusion, sadness and hopelessness.
We immediately got online and searched for a support group- we had been told that IS is very rare, but were hoping that someone out there could give us some encouragement and advice. We found both at the ISOP website, where we learned for the first time about Dr. Mehta and her IS casting technique. We immediately got on the message board there, and were connected with two families in Oklahoma who had children with IS. We have connected with both of those families- Jason & Hollie Lee (Jonas’ family) and Cyndy McKinney (Londynn’s family)- and they all have directed us to Salt Lake City Shriners Hospital, and specifically to Dr. Jacques D’Astous. We applied to SLC Shriners, and in a whirlwind of events we ended up getting an appointment for Olive to be casted just 3 days after submitting our application. We were on a family vacation at the time and ended up leaving the rest of our family and flying to all the way to SLC, not knowing at all what we were getting into!
At Shriners, they did another standing xray and found her curvature to be 73 degrees- a big jump from what it had been just a few weeks prior at the Dr. back home. Dr. D’Astous also did an xray where they held Olive’s head and feet and pulled her in opposite directions, to show how flexible her spine was. In this xray her spine was able to straighten to 25 degrees, which was a very good sign! They did the first cast and were able to get her spine to around 29 degrees in the after cast xrays- how amazing!!
We returned home and adjusted to life in the cast- no more baths or swimming, and we had to learn to be extra careful while eating, drinking, diapering, etc, to protect the cast. Olive had just learned to walk unassisted a few weeks before she was casted, so it was a BIG learning experience after the cast. She could no longer walk, sit up, stand up, roll over, etc, on her own. She just laid on her back and it broke our hearts! When she did get up and walking, she would fall easily and we were scared for her poor little head- we even considered getting a helmet for her in the first few weeks. Thankfully, though, after a few weeks she was able to build muscles that got her up on her feet and falling less often!
We’ve since had 3 more casts and are currently in our 4th cast. The 2nd cast kept us at the same 29 degrees, the 3rd cast got her down to 27 degrees and the 4th cast has her at 19 degrees! They are considering bracing after a few more casts, but they really think that they can cure her and bring her all the way down to 0 degrees!! We are so thankful to ISOP & Heather for pointing us in the right direction- our prospects here in Oklahoma City were not good, and had we not found Salt Lake City Shriners Hospital and Dr. D’Astous, Olive’s future would not be nearly as hopeful as it is now.
Picture 1- Olive, 14 months, before casting
Picture 2- Olive, 14 months, in first cast at Shriners Hospital
Picture 3- X-rays comparing before cast 1 (right) and after cast 1 (left)
Pictures 4 & 5- Olive, after cast 2, 19 months
Pictures 6 & 7- Olive, after cast 3, 22 months