Friday, August 12, 2016

When there are no medical answers

By Louise Kinross

"This is not my fault."

That was the key message I picked up on resilience when I read this Facebook post by Lean In author Sheryl Sandberg after her husband died suddenly and tragically last year. Adam Grant "told me to ban the word 'sorry,'" Sheryl writes. "To tell myself over and over, This is not my fault." 

I was trying to apply it to how I felt after a visit with my son to a surgeon didn't go as I had hoped. My son's curved spine, which developed suddenly over the last year, is worse but the surgeon doesn't want to operate. Because it's high up, if he straightens it it will move higher up, meaning he would probably have to fuse his spine up the neck to correct it, so my son would lose all movement there. There are also serious, serious risks.

But there is no way to prevent the curve from worsening. So when I got out my little blue leather notebook, with the gold tinted paper, and read through the prevention strategies I hoped might work, they were all discounted.

No, correcting his leg length difference caused by a previous surgery wouldn't help because it's not the main cause. No, wearing a brace wouldn't be useful in this case, even though it's helpful when teens develop idiopathic scoliosis. In our case, it would just make our son's muscles weaker. What about if he wore it at night? No.

No, there isn't a different kind of surgery that could be done. And no, even though there was a cheery picture on the wall showing a teenaged girl before and after her fusion surgery for idiopathic scoliosis, that was not the same beast we were dealing with. It didn't have any relevance to our case.

He would do the surgery if he thought he could help my son, but he didn't. He couldn't promise that it wouldn't get worse, and I didn't have the nerve to ask "Will it get worse?"

Which left me back at: "What are we going to do?" I started scanning the pages in my notebook again. But all I could see was #1, the leg-length difference question. I knew he'd said it wouldn't help, but I couldn't stop myself and asked again. 

I was in desperate mother mode.

I never thought that at age 22 my son would be facing a new health crisis. For some reason, when he was little, I imagined we would have everything uncovered and figured out, as well as was possible, by then. 

I'm angry at his syndrome, a bone disorder, angry at the limits of medicine and angry at my limits as a mother. 

"There wasn't anything I could have done to prevent this, was there?" I ask his dad. I've been trying to get someone in the adult system to see him about his spine since last year. 

Then I remember that when he had his hip surgery one of the surgical fellows told me he had soft bones, like an elderly person. Other people with this syndrome have developed a curved spine, in spite of what their parents did, or didn't, do.

I hate it when he has a bad pain day and moans and I don't have a good answer when he asks when it will be better. 

I tell myself I have to be flexible. I have to adapt. They will see him again in a year. In the meantime, I have to get used to not knowing what is going to happen, and not being able to do anything about it.

When I want a break, I can walk outside and sit under these giant trees in Spiral Garden, the ravine area that is an arts camp at Holland Bloorview. 

"It's not my fault."


Thank you for this post. You explore such difficult issues that few address with deep honesty and insight.

Louise, I have done a great deal of research on scoliosis. Feel free to contact me if you want any information. Furthermore, my 22 year old Sophie has a 90 degree curve and has never had surgery. Now, she is not mobile like your son, but she is doing well in spite of it. Let me know if you want to chat a bit.

Louise, I'm so sorry that this has presented itself so much later in life. Keep asking questions, keep researching, keep managing the pain- when there is nothing that can be done by doctors, this is what will get you through- knowing you, his mama, did all she could do.

I'll never remember what a mom said to me as we stood in a hospital and the doctors ignored her.

"They can tell me all the things their textbooks tell them...I know my kid. I don't have to listen or believe them. Medicine isn't the all and end all. I am still going to suction him, rub his tummy, give him warm baths and sooth him, even if they say none of that will help. He's not going to get better, so I might as well start listening to my heart for solutions."

This was after being sent home once, going back and refusing to leave, being seen after fifteen hours. By day two they figured out he had twisted gut syndrome, which is very painful and sometimes fatal. They operated right away. Trust your gut. Don't let doctors make you feel any less. Man made medicine doesn't always help. Trust yourself as a mom and go back to what your heart tells you is right for Ben. You don't need a doctor to tell you that.