I had noticed it somewhat early. I just assumed maybe it was the way he was laying when I changed him, or held him when I burped him, so I didn’t think much else of it.
When River was around 7 months old, he started sitting up on his own. We noticed that when he sat, he leaned to the left. His little belly also pooched out more to that side as well. One afternoon late April (2012), my husband Travis was rubbing his back, and noticed his, what we thought shoulder blade, was sticking out more. He showed it to me, which I had seen before but assumed maybe his shoulder was more defined. We decided better to be safe than sorry, and call the Pediatrician.
Two days later we seen River’s Pediatrician. We assumed he would come in thinking we were crazy and over protective parents. We explained why were there, what our concerns were, and he proceeded to check River out. I turned River around and he seen it right away. He didn’t think we were crazy at all, he seen it too. I was afraid that if something we wrong, we’d be sent away and told to come back later. Thankfully, our Pediatrician knows Addyson’s case, and brought up the possibility of Infantile Scoliosis. From there, he sent us to Children’s in our area to get x-rays. River had 1 on his back. The tech checked the x-ray saying that if the curve was more than 10 degrees, she’d need to take one of him on his side. I waited around, and she came back in and took another of him on his left side.
On the way home, we talked about what happens next. Along with River, we have a 6 year old son, and 4 year old daughter. Explaining to them was challenging, but we wanted them aware of seeing River different, and what to expect. We told them River would be getting armor, just like super hero’s wear. “That’s so cool”. We see an Orthopedic and go from there. I had no idea what to expect. I’ve never heard of babies having this. Last time I had even heard of scoliosis was 6th grade when we were sent to the nurses office to get checked for it. We got home about 45 minutes later to find a message from the Pediatrician. He had told us about an Ortho at Cincinnati Childrens during our appointment, and was going to put a call into him and see what he suggested we do. The message was to call and set up an appointment with him. So I did.
Two weeks after setting up the appointment, my husband and I were at Children’s Liberty Campus for our consultation with the Dr. In the meantime, Travis had been reading up on Infantile Scoliosis, finding some information on the Mehta Casting. He mentioned that most children with a curve over 25 degrees was a candidate for casting. I myself wondered if things were getting a bit extreme. I knew nothing about this, but I know sometimes Travis overreacts and maybe we weren’t quite to that point as far as River went.
The Ortho nurse was the first person we spoke with. We went over why we were there, what we had seen, how long ago we’d noticed, etc. She asked if we had seen the X-rays. At this point we had not, we were really anxious to though. She put them up on the screen and it was so much worse than I had ever imagined. I thought, scoiliosis, curved spine, he’s a baby, it will straighten in time. When I seen that though, my heart broke. It was a little S, with an obvious curve where we thought shoulder blade. I looked at Travis, he was getting teary eyed. I don’t know what I expected, but it wasn’t what I seen at all. She looked at the report and told us from what the tech could read, it was atleast a 42 degree curve, but said the Dr. would explain everything when he came in.
When he finally came in, we talked again about what we had noticed, and when. We stood there when he looked at the report from the tech, and he pulled up the x-rays. He told another Dr. that his curve was definitely more than 42 degrees and he was more in the span of 45-50 degrees. It was then we were given our 1st lesson on Mehta Casting. He informed us on how it works, why it’s the best solution, and what to expect, kind of. He left the room, told us to wait for the nurse to come back in and she’d go over more details, and set up our first surgery date. Lucky for us, they had a cancellation the following week. River would get his first cast on Wednesday, May 9th.
We arrived at Cincinnati Children’s Main Campus Wednesday morning at 7:30. Im not sure how much we slept the night before. I remember thinking before putting River down, that maybe I should just hold him and take full advantage of cuddling with him before this big rock is put between us. River was in such a good mood. Something I was worried about being he wasn’t allowed to eat after midnight, no bottles after 3am, nothing after 4am. He was in the best of spirits though. Smiling at the nurses, posing for me and the camera, being “so big”. Dr. came in as we were getting registered, and put the markings on River’s back. For some reason, when he did that, it was like River was part of something… we chose a green cast.
We had talked that whole week about how different things might be. River had just started crawling 2 days before casting, would he do that again? Would it be to hard? To heavy? No baths… River LOVED splashing in the bathtub. A week before our appointment with the Pediatrician, we were looking for pool toys River could use. Unfortunately, River’s first summer he was going to be able to enjoy, would be spent with more indoor activities and no pools.
Another nurse stopped in and put River’s t-shirt on that would be worn under his cast. River smiled, and played bashful to all the nurses. He was loving the attention of course. Within an hour of being there, we were on our way back to the O.R. We walked down the hall holding our little man, taking full advantage of his cuddles because we knew he’d feel so different when we seen him again. We were greeted by quite a few nurses that would be working on River. All anxious to get ahold of him they said. Travis and I gave him hugs, and kisses, and handed him over to a nurse. He put his head on her shoulder, and they went on their way into start his anesthesia, and casting.
We were taken to the waiting room, nervous, tired, anxious, and a whole list of things that I’ll experience again in another 4 weeks. The Dr. told us it would be about 2 hours, and he’d meet with us when it was finished. I don’t think it was an hour that had went by when they called us to go into a room to wait for him. He sat down with Travis and I and said River did fine, and was on his way into the recovery room, we’d see him shortly. He was able to get River’s curve down to an 18 degree curve in cast. He left us at that, and told us we’d get to see River soon.
About 20 minutes later, we were called back to the recovery room. That was the first time I actually cried. Seeing my baby boy in this big bulky piece of concrete, asleep, swollen, and having no idea how different things would be for him when we woke up. The nurse was working on River’s cast. Putting the gauze around it, taping it around the edges so it wouldn’t be so rough. It looked just like what I had seen of Addyson’s on the video, and on YouTube. As she got to working on the back, she asked me if I would pick him up and hold him so she could pad the back of it. When I picked him up, I looked at Travis and cried he was heavy. It was so hard to hold him, and comfort him with this thing. I felt so bad for my baby. What would his little mind think when he woke up? River woke up about a half hour after we first went back to recovery. He was upset, wanted to move, and was hungry Im sure. He finally came around, was awake, and taking some juice and milk. We went over all the instructions with the nurse, and were free to go.
Our first night was rough. River cried most of the day, understandably. That night, we sat up to sleep. He tried to lay his head on my shoulder, but the cast prevented his head from actually reaching my shoulder. I folded up a burping blanket and put it between he and I, and he would rest that way, sitting up in my arms. It was a long night, but we made it. The next day, we took River back down to Children’s to have his cast trimmed around the legs. He wasn’t able to sit up without falling backwards, and his legs looked as if they started changing colors when we tried to sit him upright. We put a call in the night before (night 1), and the nurse had us come in the following day no questions asked. We went down, they trimmed them up, and all was right again with sitting up.
On week 3 with our first cast. It’s was an adjustment for sure. River would sit up, but would have trouble keeping his balance still. He’d reach for something, and topple over. He just started crawling again, but he’d get exhausted after a few steps, but he got it. We made changes to his dinner routine, instead of meals a certain time of day, we’ve made meals go throughout the day to avoid him getting to full in the cast to the point of being uncomfortable. Thankfully, night #1 was our only issue with sleep. Since night #2, we’ve been sleeping all night with no problems. We get stares when we’re out. We’ve heard comments about how broad his shoulders are, how big he is for 9 months, and some just come out and ask what happened. People hear scoliosis and immediately we hear about their aunt, grandma, or themselves who have it as well. And while I don’t like to dwell on my children having the absolute worst case of anything, this is a little more serious than what an older person might deal with having it. It’s more rare in infants and babies.
River is now getting ready for cast # 15. Honestly, I thought we’d be finished by now. I thought a few casts and we’re done. Not the case. River lost some improvement he’d made with his first 3 casts, and up until the last 2, we hadn’t had anymore. And had even gained more curve. We’re hopefull just as much today as we were day 1. We have put River in the hands of an amazing team at Cincinnati Children’s, and I trust that they know what’s right for us. We’re adjusting. Still. Just as everyone said we would in the beginning. We’ve even found a few cast families in our neighborhood! It’s been a long road, but we’re doing what’s best for River. I still cry when I see him in recovery. It breaks my heart when he asks for a bath and he can’t have one, but River is slowly getting back to himself. He has his moments I think where he doesn’t understand why this thing is attached to him. He still carries the biggest smile ever, plays, laughs, makes messes, runs all over, and while he may get tired and need a break a little more often, he gets right back to it.