One of the things I hear often, in the support groups I’m a part of for congenital scoliosis and EOS scoliosis, is how thankful people are for the support and understanding these groups provide because their own family and friends just do not understand the same way. Thankfully, most family and friends really do want to be supportive and are well meaning, but often their attempts to be sympathetic, supportive, or encouraging end up doing the opposite: shutting down communication and making a parent feel worse. My husband and I have felt this too. This comes up so much in the groups, naturally, it prompted me to write this entry. So I asked parents to share things that are said that they wish people would not say. There was a long list that came through but these below were the most frequent. (If you have child with one of these types of scoliosis, you might want to share this with important people in your life, especially if you are new to the diagnosis.)
“WHAT NOT TO SAY TO A PARENT WITH A CHILD WITH CONGENITAL SCOLIOSIS OR EARLY ONSET INFANTILE SCOLIOSIS”
“I know someone with scoliosis” or even the “I know someone with scoliosis and they turned out fine” and “Oh my neighbor’s 16 year old daughter has scoliosis, she practices yoga to help” Unless those statements includes the words “infantile scoliosis” or “congenital scoliosis” statements like these should not be made. Infantile, Early Onset or Congenital Scoliosis are so very very fundamentally different. They can be much more dangerous and potentially life threatening. They can not be compared to the scoliosis you are probably already familiar with. Even the treatment for these types are significantly different. The young growing spine is very different than that of a mature or almost mature spine. And if you are looking at congenital scoliosis, that means there are bones in the spine that never developed properly and they never will.
“At least you caught it early while she’s so young” – This seems like the right thing to say and it’s a little tricky. Catching it early means this is a different type of scoliosis and has a very different treatment plan that can be much more complex. No matter how successful treatment is for our kids they will have to be monitored for their entire childhood and that’s just for those who have responded well to treatment. Imagine what it’s like for those who do not respond well and have complex cases.
“Have you looked into chiropractic medicine, a chiropractor can help and even fix scoliosis” I’ll be honest, this one infuriates me. A chiropractor cannot fix scoliosis! Sadly, there are way too many chiropractors out there who will tell you that they can, in fact, fix scoliosis. What’s even sadder, there are way too many chiropractors who have no real idea what infantile scoliosis is or what congenital scoliosis is. A chiropractor can help alleviate some discomfort for adults and adolescents with mild to slightly moderate curves, but that’s it. It can be dangerous to have a chiropractor manipulate the spine of a child with congenital scoliosis, where bones that aren’t formed properly. Chiropractors can be wonderful care providers for for many other things, but not infantile or congenital scoliosis.
“God only gives people what they can handle” – Unfortunately many people really can not handle the stress of really complex medical cases. Just watch the news to see all the people who do NOT handle their medically complex child well to see that this isn’t true. Most of us rise to the challenge because we have to, not from any per-existing virtue.
“That curve doesn’t look too bad” – Because you are a medical expert you know what constitutes a bad curve from a good one? What is a good curve anyway? Sure a curve might not “look” bad but that’s what’s deceiving, that curve if not treated quickly and properly could grow rapidly — just as fast as a young infant grows. We know you mean well, but it belittles the seriousness of the journey and situation.
“I know just how you feel.” Unless you have a child with one of these types of scoliosis you simply do not know. Please do not think you do.
“At least there is a surgery for that. I hear about people getting spinal fusions all the time and they are just fine” – First off, spinal fusion surgery with rods is a very difficult and complex surgery. Surgeons will often tell you the recovery for a complex spinal fusion is far more difficult than the recovery from open heart surgery. Secondly, you can’t just fuse the entire spine of an infant or toddler. Once you fuse you stop growth at that point of fusion, so that spine would not grow anymore in the areas fused and thus the chest cavity would not grow either, therefore the lungs and heart wouldn’t develop properly. A infant’s spine that is completely fused would be a death sentence. So then you might say growing rods makes sense, again a very complex surgery that requires multiple surgeries over years and by nature have a 90% complication rate. The physical, emotional trauma of repeated surgeries on little ones is not something to take lightly. Keep in mind a child also has to be ‘big’ enough for growth rods too. As advanced as technology is they still have not been able to create very small instrumentation that works with young, small and soft bones. Yes, this is the only option for many at some point but this is far from ideal.
“Everything is going to be all right. I just know it” This is often a statement made in hopes of making someone feel better but the reality is you have no way of knowing if it will be alright or not and such a statement ends up sounding like an empty platitude — It simply doesn’t make a parent feel better.
“He will outgrow it” – If we took that approach we would be in real big trouble.
“At least it’s not cancer or something serious” -It might seem like a good thing to say when you are unsure of what to say, but this is actually a very condescending remark and can only add to a parent’s feelings of others not understanding. Avoid measuring the stress, anxiety, suffering, or discomfort. (And knowing that things could be worse is hardly cheerful news.)
“Have you tried ____ exercise, physical therapy, acupuncture, essential oils, super magic moon crystals, this weird new therapy that I heard about one time but know nothing about? – We parents don’t want to defend ourselves to you on how we have already tried this or that or don’t trust the efficacy of a certain treatment, especially if your evidence is only anecdotal.
“Did this happen because of something you did in your pregnancy” – Asking whether a parent’s pregnancy, genetics, diet or what-have-you led to this is actually rather insensitive. Blame is the last thing we need. Just to be clear, the answer to these are NO!
“Well he runs and walks and looks normal. It’s just scoliosis; I’m not sure what the big deal is? – There are many diseases out there where people look ‘normal’ and aren’t normal. Just because our kids hit all their milestones and aren’t laid up in bed in pain doesn’t mean this isn’t serious or a difficult road to travel.
“It’s great you can just go to the doctor’s office and have a cast applied so easily” – Having a Mehta/EDF cast applied is nothing at all like having a cast applied for your broken arm. Mehta casts are applied in the OR, under general anesthesia, full intubation, with an entire team of doctors and specialists. Our kids are placed into a complex and very precise form of traction to straighten the spine and address the rotation of the spine. Then the cast is applied to the entire torso, which isn’t easy, it needs to be tight but not too tight. It’s crucial it’s done precisely to protect the chest wall, respiratory function, organ function and more. I could go on and on….this is a pretty big ordeal!
“Why don’t you just get the surgery already” –It’s insulting when you think surgery is the best and easiest option.
“They are doing such wonderful things these days, technology is much better today than 20 years ago.” I’ve made the mistake of saying this at times too but even if the prognosis is good, what the parents and child is going through is far from wonderful and this can undermine those feelings.
“So she’s in a cast, she can still have a bath and swim right? You can take that off” – I think every single one of us who have a child in a Mehta/EDF cast has heard this one. It baffles us all and drives us crazy. It’s a cast, not a brace it doesn’t come off unless you cut it off. Please remember this is a CAST not a brace.
“Why can’t she wear a brace like other girls” – This isn’t mild or moderate adolescent scoliosis. This is a whole other animal. Trust us, if a brace was going to do it and be our best option, we’d all have our kids in braces.
“Why are you traveling so far to see a surgeon, why can’t you just see the local orthopedic surgeon, I’ve heard he treats scoliosis?” – These are very rare forms of scoliosis that generally require a surgeon with vast experience and expertise in these areas. Sadly, there are plenty of great orthopedic surgeons who treat scoliosis for adolescents but do not have the understanding, experience or knowledge for these cases. It would be great if we could just go across town. This is another reason why I wish EOS and Congenital had entirely different names that did not include the word “scoliosis” – which I talk about in another blog here.
“I know your 2 ½ year old is in one of those casts, but he will be alright coming over to a pool party where other kids will be swimming right? He understands he can’t get in and will be fine watching, right? I was downright shocked how many parents in our support group mentioned something along these lines being said. This is particularly cruel. We understand our kids cannot attend all parties and functions because of “cast life” and we don’t expect you to change your plans by any means. What we do expect is respectfulness and when there are functions where our kids will be there no matter what, do not ask our kids to be mere spectators. This would be hard for an adult to even do, imagine how hard this can be for children who are already going through so much.
Here Are the Things We Wish People Would Say
When we’re frightened or stressed about our children’s health, advice is often the last thing we want from friends and family. What’s more important is simply being listened to—and knowing that we’re being heard. Try, “Tell me what’s going on, help me understand the differences between infantile scoliosis or congenital scoliosis and adolescent scoliosis, so I can understand your journey just a little better?
Instead of saying “I know how you feel”, a better approach is to ask something like, “How are your mood and spirits holding up through this?” If the person you’re concerned about is anxious or sad, this gives him a chance to tell you how he feels, which can be a big relief to someone who’s trying to pretend he’s doing just fine.
“Educate me, what does casting do that bracing doesn’t, I want to be able to explain this properly to others as well”
Castings, surgeries, even appointments with our surgeons can be far away and require a lot of travel, many have to take air travel to see the right doctors. Ask, “when is your next appointment? I’d like to help by doing ____? Many parents have other children that need to be cared for while we are gone. Offer to help with the kids, the dog, make a meal for when the family returns. Simple things like this can help in more ways than you can know.
Keep in mind that every person is different, and every relationship is different. When in doubt, tread lightly, or even ask how to proceed: “I am here for you, but I’m not sure how to discuss things. Tell me about this condition, what you are going through now, and what you prefer and need.”
There’s a big difference between pity and empathy. And sometimes, you don’t have to say anything. Just being there is enough.
Do you have anything else you wish people didn’t ask? Are there other things you wish people would ask?
Nora's Journey with Early Onset Congenital Scoliosis 