Friday, March 4, 2011

Guilt: That Final Frontier (Part 1: Parenting)

I've been thinking a lot about guilt lately.

Not that guilt is anything new for me. I was raised on it, like most kids, learning both to feel it and inflict it. I apparently have a particular talent for the former, although I've had my moments with the latter as well.

I worried from the moment I got pregnant, if not before, about the things Ellie might inherit from me: my allergies, the severe asthma I had in childhood, poor teeth, body image issues, etc. And that was when I was essentially healthy!

Recently, we took Ellie to see a pediatric neurosurgeon, something that was put in motion during testing to try to rule out physical problems as the cause of her recurrent UTIs. We had been told that while her MRI looked mostly fine, the was sone abnormality around the lumbar spine that we should consult the Neuro about it.

Although I knew, and even informed the doctors of our family history of it, I was sad and surprised to hear the doctor say Ellie has spina bifida occulta as well as what might be a tethered spinal cord.

Those are my genes. And perhaps it would have been much worse if I hadn't started taking folic acid a full year before I got pregnant. But there's nothing like finding out you passed on some bad genes to your kid. And wondering what else she got in the crap shoot that is our DNA.

Guilt: It does a body good -- not!

The good news is the surgeon says it's borderline whether Ellie needs surgery. So we get to wait and see whether things get worse when she has her next growth spurt, and hope that if they do, we didn't wait too long and she suffered permanent nerve damage in the meanwhile. Which will make us both feel guilty if it happens. But we also don't want to put her through unnecessary surgery either, even if it is the most minor (and most common) surgery a pediatric neurosurgeon does. As a friend who's a pediatric anesthesiologist said recently, "A surgery is only minor when it's on someone else's kid."


If you haven't already, please consider participating in the upcoming edition of Patients For A Moment that I'll be hosting here on March 9 with a topic of guilty pleasures. See the details here, and get me your contribution by midnight on Sunday, March 6. Thanks!


Penelope said...

I am so sorry to hear that you've had bad news about your daughter's health. Try not to feel guilty, you didn't do anything to cause this to happen. (and based on your previous posts) you will be on top of it for the rest of her life.

Aviva said...

@Penelope: Thank you! It's just ... I spent so long debating about having a baby, focused mostly on emotional arguments against it. Other than bad teeth and allergies/asthma, though, I didn't worry too much about physical things I could pass on. She really is blessed with general good health it's probably silly to be focused on this one issue that may not ever need to be dealt with. But my nature is to worry, so I worry and feel guilty for having passed on this (and probably other) issue. :-/

I do appreciate your encouragement, and you're right, we will totally be keeping an eye on it with her!

Laurie said...

Hi Aviva,

I am sorry to hear about Ellie's situation, and hope it can treated as simply and non-invasive as possible.

I know you know from reading my blog how much we thought about this stuff during our 4.5 year journey to having a child: guilt we couldn't have a child easily because of my conditions; guilt the pregnancy was so high-risk and challenging because of my conditions, and of course, worry and pre-emptive guilt that some of my problems would end up hers, too. And now that she's here and happy but also dealing with some health issues of her own, the guilt set in.

Years ago, I wrote a post in response to some callous radio interview that said T1 diabetics shouldn't reproduce(!) and I went off about it. Part of what I wrote was saying who knows what my child might end up getting, what constellation of genetics and traits from all of us will emerge, but that there are many wonderful qualities she could inherit and learn from her relatives with illness, too--compassion, determination, etc.

So Ellie may have inherited a health issue from you, but A) you know how to advocate for her; and B)more importantly, she gets and learns so much other stuff from you that is a much bigger part of her life

Thinking of you!