We are more than two months post-op and coming up on almost three years since diagnosis and treatments. Naturally, throughout much of this journey, I have had time to reflect on specific experiences. Over the last three years I’ve also gained a great deal of knowledge. Of course, like many difficult roads traveled, there are moments where you think, “I would have done that differently”. Thankfully, at least so far, my list isn’t that long but I do think others can learn from my reflections.
Here’s my list of what I would have done differently knowing what I know now:
1. Comparing. I wish the literature, the websites, the overall information and patient stories I found on infants or young children with congenital scoliosis were more black and white in stating how very different cases of congenital scoliosis were. Most resources provided vague synopses of the disease so I didn’t understand the varying degree of complexities there were. Of course I could recognize the differences in extreme cases but there is still so much in between that. I didn’t realize how two children’s cases could ‘seem’ so similar yet come to find out much later, they really were very different. That was the hard piece to understand and is worth repeating, cases could seem so similar yet they really were very different.
Early on I tried comparing my child’s case with others that sounded similar and it caused a great deal of frustration because the treatment plans and approaches were very different. It made me question everything but it was also a great way to really learn more. The fact of the matter is, congenital scoliosis can have such varying degrees of complexities. What seems so similar can, in fact, be very different but it’s hard to understand that or actually see the vast differences unless you are a trained surgeon.
My advice to myself now would be, do not compare your child’s case to another. Ask all the questions, and let your surgeon point out cases that can legitimately be compared.
2. Second Opinions. This one is tricky, ultimately, I think second opinions are very important for congenital scoliosis and even early onset scoliosis. They are both so very rare, and I do think second opinions can be very helpful.
We got our diagnosis when Nora was five months old. I quickly learned this was rare and could be complex. I immediately thought we need to get a second opinion right away. Here’s the thing, we were very lucky to be referred to the surgeon who has been treating Nora since the beginning. He’s has extensive experience and background in congenital scoliosis and early onset scoliosis. He trained at one of the best hospitals for this in the country. We were lucky to have been referred to him from the get-go. I’ve learned many folks are not as lucky. Many are referred to the pediatric orthopedic surgeon who treats adolescent scoliosis and numerous other orthopedic issues, the surgeon who does not see these cases regularly.
Still, I rushed to get another opinion. The surgeon we saw was the chief of orthopedics at a top 10 children’s hospital in another state. But this surgeon was just like the one I referred to above. It became clear in the appointment this man did not see congenital scoliosis patients regularly and yet he would have been happy to taker her on as a patient. His recommendations and assessment was extremely different. Looking back, I never should have seen this surgeon. I should have researched more who I was going to see. Early on I didn’t know the differences in pediatric orthopedic surgeons. I assumed because this surgeon was the chief of orthopedics at a nationally ranked children’s hospital, surely it meant he knew a lot on EOS and congenital scoliosis. He clearly did not. He also should have been upfront and referred us to a hospital on the other side of town that specializes in this, but he didn’t and that’s a whole other story.
We got several opinions over time. We ended up seeing some top experts in different parts of the country and it was helpful but I also think our timing wasn’t the best. With congenital scoliosis you, almost always, are in a ‘wait and watch’ mode. Tom Petty said it, the waiting is the hardest part and it really is when you first get the diagnosis with a young child. The urge is to run out and get those second opinions right away. But here’s the thing, the young growing spine can be unpredictable. There is a vagueness about what to do exactly and when to do it in many cases. I think it’s best to make sure you are seeing the right type of surgeon in the beginning but then wait on second opinions. Wait till things have progressed and surgery or other forms of intervention are being discussed or when things start to impact the overall health of the child. This is when second and third opinions are going to be the most valuable, I think. The one good thing about congenital scoliosis is there is time. Usually nothing requires an emergency type of surgery or intervention, you have time to figure our who your child should see.
Now, ironically if your child has early onset – infantile idiopathic scoliosis – well that changes things. This is just another example of how different these two forms of scoliosis are. Early onset infantile scoliosis, in a young child, does not have time on their side usually. The most effective treatment is usually EDF/Mehta casting. And casting is most effective when started young to maximize the opportunity of rapid growth that is ahead of the child to achieve growth guided correction. If you have a child with this form of scoliosis you need to act fast to make sure you are seeing a surgeon with a great deal of EDF/Mehta casting experience, unfortunately this surgeon isn’t always easy to find either. There are still many surgeons who say casting is barbaric and the best option is wait, let the curve progress, and do growth rod surgeries later. That thinking blows my mind.
3. Watching YouTube Videos – When I learned about the surgical options we had, I immediately began Googling. I was mainly looking
for peer evaluated published studies on the surgical options. Soon into my searches, YouTube videos popped up that were showing the actual surgeries… like in the OR… right there looking down into the exposed spine. Watching surgical procedures has never grossed me out, in fact, I find them usually fascinating. Many years ago, I actually worked as a veterinarian technician where I got to assist in surgeries and I loved it. But there is something very different about 1. Watching orthopedic surgeries. So much hammering, chiseling, sawing. It’s tough and rough, it’s doesn’t seem as delicate as say watching an open heart surgery. And 2. Knowing that the surgery I was watching might actually be performed on my child adds a whole personal and different element to it. Watching these videos was a mistake. I didn’t watch for long but it was a mixed feeling of fascination, being scared, and feeling sick to my stomach. Looking back I would tell myself, do not watch videos of what your child’s spine surgery will be like. This seems so obvious….I know.
4. Going Back to the OR with my Child for Castings. – Nora was just 14 months old when she had her first cast applied. At the hospital that day, the nurses asked us if we wanted to go with her into the OR and stay while she was put to sleep. We said yes. It was really really hard to hold my child as she screamed and whimpered and fought the mask that slowly put her to sleep. I can still hear her soft whimpers that sounded like nothing I had ever heard from her before or since as she lay barely asleep on the table. It’s too much, too hard emotionally to witness that. But it was too late, we saw what we saw and experienced what we experienced, we felt locked in so we went back into the OR with her for every casting she had. There are times in life where ignorance is bliss. Looking back, I would tell myself not go back into the OR on casting days. The day and process is hard enough as it is.
5. Preparation for Recovery in the Hospital – If you follow my blog, or know me from the support groups, or from everyday life you know I’m usually extremely prepared. I’ve researched and talked to other parents, surgeons, etc, almost obsessively about everything in my daughter’s diagnosis. You would think I would have been fully prepared. But I wasn’t.
Our surgeon expected Nora to be released from the hospital earlier than she was and for whatever reason, I didn’t prepare myself really for the possibility that she would be there longer. I didn’t even pack extra clothes for myself. Looking back I would have prepared myself mentally for the possibility of staying longer.
He also was hopeful she wouldn’t need a blood transfusion, but of course it was a possibility and we filled out all the paperwork beforehand in case it did need to happen. Somehow, again in my mind, I didn’t think she would need one. She did need transfusion a couple days later. I wasn’t fully prepared for that mentally. There’s something about the words “blood transfusion” that seems so scary and horrible but really it wasn’t bad and it was the best thing for her.
Almost all the advice I got from other parents was: the first 24 hours post-op are the hardest. So that’s what I expected. That wasn’t the case for us. The second day was much harder. Seeing it be harder than what others told me, threw me for a loop and I couldn’t help but let my mind wander and worry that things were not going well. When in fact, everyone’s recovery is different and it’s actually really common for day two to be much harder.
I wasn’t fully prepared for the difficulties we faced in recovery. The harsh realities of the side effects of narcotic pain meds and anesthesia – no one really talked about that with us. Those side effects were some of the hardest to deal with in the hospital and some of the most heartbreaking.
Looking back, I would tell myself to fully prepare for many of the possibilities that can happen during recovery. I would ask other family’s to talk about the parts no one talks about. I would ask about every aspect of recovery. I thought I had but clearly I missed the mark.
6. Asking Questions – Again if you know me, this one probably seems odd because I ask a lot of questions and have even written a blog post that lists tons of questions, I think are vital to ask your surgeon. But I didn’t ask all those questions in the beginning. I asked a lot of questions but there were many I didn’t ask, many important questions I never thought to ask in the beginning. I was just very lucky to have found a great surgeon who, thankfully, would have fit the bill anyway. But many of my questions early on never would have revealed that…we just got lucky. Looking back, there are probably a dozen questions I wish I had asked early on, I’m thankful we have a great surgeon who would have been able to answer all those questions with the answers I would have been looking for.
Looking back, I would tell myself to research more what questions I should have asked.
Nora's Journey with Early Onset Congenital Scoliosis 