Wednesday, April 23, 2014

Highly Specialized Mommy Wars

Because generic mommy wars are never enough, AMIRIGHT?!?

I went off and T.witter for Lent. After 40 days, I signed back into FB. My FB feed was littered with posts from a support group for parents of children who have been diagnosed with craniosynostosis. At first, I just scrolled past them, because people do tend to post quite a bit in that group. I kept scrolling until my eye hit on one word—


Okay, I said to myself. What are we calling barbaric? So I moseyed over to the page, and lo! Some mom started a “conversation” by saying (essentially) “Well, no one has really given me any flak for my decision, but I feel like people MIGHT give me flak for my decision to use the endoscopic method, and how do you deal with being judged by all those other horrible people who got CVR and want to feel smug about it?”

This is where a quick step back is necessary. There are multiple methods to deal with craniosynostosis. One of the most commonly used ways is CVR (cranial vault reconstruction). That’s what Lis had. It is the “most” invasive, though to some extent, ALL of these surgeries are really invasive, because you are dealing with the skull and the brain. CVR is the most extensive, but it is the most widely practiced, and has been in use in one iteration or another for at least 50 years, if not more. The endoscopic method is newer, and somewhat less invasive. It has great potential in a certain category of cases and babies, meaning certain types of craniosynostosis and babies of certain ages and stages of growth and development. It also requires the use of a helmet for awhile after the surgery.

So! Back to Ye Olde FB. I sat there for a moment, stunned. I mean I paraphrased her words, but really, it wasn’t just an attitude that I was picking up on—it was her black and white words. She was posting something just to start an argument and be all “poor me” when she admitted in the next breath that no one had said a bad word to her about her choice.

Of course, people chimed in and basically said, “Nope. We made the right choice, it’s such an individual choice, based on your own circumstances, no one would dare judge, etc.” I felt better. That is, until another woman chimed in and said she was so happy that she had gotten the endoscopic method for her child, because CVR was BARBARIC and her doctor agreed that it was a BARBARIC procedure, and how could any GOOD parent do that to his or her child, etc.

Cue me, sitting there again, stunned again. Really? This is what we do in a support group? We’ve all been through a shared terrible experience. We all know what it is to see our babies with eyes swollen shut for days, and to hear their cries change and become more desperate and high pitched because of fear and pain. We all nod knowingly when someone talks about clammy hands and a racing heart whenever she enters a hospital, any hospital. We offer alternatives to plain old hand sanitizer, because we can’t stand the smell of the stuff that they used in the hospital (citrus hand sanitizer FTW!) We share each other’s joy when it goes well, when our babies begin rolling or crawling, and we share each other’s sorrows when we find out that it was too late, and damage was done, or another surgery is necessary.

Some people jumped in and said just that. Others pointed out that using the word barbaric for an acceptable and highly effective medical procedure that saves lives is wrong, rude, and offensive. I said nothing. I just kept looking at the word barbaric.

Oh, I could show you pictures. I have terrible pictures. Pictures of Lis when she looks nothing like herself; she is so swollen that her face looks like it was painted onto a balloon. I have pictures of her incision, and it’s brutal: dark, black slashes weaving in and out of her skin, fifty of them, and those were only the visible ones. Let’s not forget the dark blue antenna on top of her head—where the non-dissolvable stitches were tied off. Why non-dissolvable stitches, you ask, when all the rest were dissolvable? Well, that’s because her condition had drastically worsened between the scan and the surgery. They had to move her skull so far apart they couldn’t stretch her skin back over all the way. Pieces were grafted on, and new skin had to grow, so we got to take Lis home with a hole in head.

Oh, yes, I could show you pictures that would make your stomach turn and your tears fall.

That doesn’t mean it’s barbaric, though. Barbaric is savagely cruel; exceedingly brutal; primitive; unsophisticated. There is nothing savage or cruel about saving a life of a child, even if the methods have to be extreme. It’s not brutal, which implies savagery or violence. I suppose, if you’re going to be one of those people that argues that all surgery is violence upon the body, then, well. I welcome to you the century that we live in, and I invite you to invent the first medical tricorder.

If I impute all charity possible to this woman, then what she must have meant instead of barbaric was primitive. Maybe I can see where she was going if I tilt my head and look at it like this: CVR is a primitive solution to the lack of skull growth, because it cuts the entire skulls apart and moves it apart. Endoscopic is not primitive because does not requires cutting the entire skull, targets the problem area, and uses a helmet to mold the skull more naturally. Maybe that’s what she meant. While I think she’s wrong, I think that is more charitable and less offensive, and certainly less mommy-war-ish.

CVR is well practiced and effective. Because it’s been done effectively for so many years, many, if not all, of the “trouble spots” with the surgery have been identified. For example, when doctors were first doing CVR surgeries, the main thing from which children died was blood loss. Doctors then made it standard practice to immediately begin a blood transfusion as soon as the surgery started, thereby eliminating a number of deaths. There are many other items such as this one to complement this view; too many to list.

The endoscopic method is newer, and results have not been tracked over a longer period of time. Depending on which source of data to which you turn, it looks likely that there is a higher risk of a second surgery with the endoscopic method. I think this method has amazing potential; I also think this method will likely become the standard of care for certain types of craniosynostosis in a certain subset of children. However, there are some children for whom this method will not work—Lis, for example. Lis was on the cusp of not being a candidate for the endoscopic method because she was four months old when diagnosed. We would have had to have the surgery IMMEDIATELY. This was not feasible for a variety of reasons (fever, insurance, parental shock). By the time Lis was cleared for surgery, she was six months old, and was too old for the endoscopic method in her condition. Even if we had done the endoscopic method at that point, we would most certainly be facing a second surgery because of how much her condition had worsened.

I, personally, was uncomfortable with the endoscopic method for two other reasons. First, I felt like I was being sold something by a salesman. The people and doctors touting the method were just too…too. I don’t know how to explain it, but I felt like I was being sold on something rather than given data and medical opinions. Second, I was extremely uncomfortable with the idea of a technician shaping my child’s head instead of a doctor, which would have happened with a helmet. NOTE: All that being said, this was my feelings within the context of our daughter’s care. If, at any point while reading this, you find yourself saying But the endoscopic method is XYZ/better/safer/cooler, I invite you to reread above where I mention that I think it is fantastic for certain cases and will likely become the go-to method for those types of cases. Just not ours. I ask you to extend the same courtesy to me.

Don’t we, as parents, have enough to deal with without creating drama? Especially as parents of children who have had traumatic surgery—don’t we have enough on our plates? Don’t we get enough judgment from outside sources on our choices, whether it's everyday choices like McDonalds or daycare, or extraordinary choices, like medical treatment? When I took Lis out into the world the first few weeks after surgery, I got so many looks from so many people—horrified, scared, pitying, disgusted. Some people actually stopped me and asked, “What did you do to your baby?”

In the face of this, I thought that a support group for craniosynostosis parents would be a safe place, where no one would ask me a question like that one; yet, there was, in black and white, from another parent who should have had the same sensibility that I do: What did you do to your baby?

I should have known better. And my answer is, and will always be: I saved my baby, just like you saved yours. 

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