What Lies Inside

Just yesterday, the US Preventative Services Task Force recommended that women begin regular mammogram screening at age 50, not at age 40 as previously stated. Furthermore, they announced that going in every two years was plenty of prevention, not annually, thankyouverymuch. (There's a full-blown detailed article in the New York Times here (sign in may be required to read article), and a more scaled-down article at CNN here.)

The announcement, needless to say, is quite controversial. On the one hand, the panel points to reams of data claiming that overexposure is a much greater risk than not. That is, repetitive screening leads to unnecessary further testing, biopsies, and that ol' favorite, needless anxiety. Annual screening at 40 has not budged statistics regarding lives saved. (These new guidelines obviously do not apply to those with an obvious genetic component and/or family history of breast cancer.) On the other hand, doctors and cancer survivors claim benefits of potential early detection outweigh risks, and that early detection is ultimately what saves people.

Preceding this release was a JAMA article published last month raising the concern that standard early screening procedures for breast and colon cancer often failed to discover larger and more serious cancer elsewhere. The authors concluded that early screening should really focus on finding markers that lead to a higher risk and incidence of certain cancers, not just wholesale imaging technology for the population at large.

I am not at risk for cancer (as far as I know, and my genetic information has now been pretty thoroughly mined), nor have I ever been treated for a potential problem (knock wood). As someone who had her breasts compressed between two steel plates for the first time last spring, I'm breathing a small sigh of relief. I think.

While I'm happy to share this information with you as a public service, this is not a cancer blog, so let me get to the point here: My reaction to these two bits of news was not shock and horror or even a furrowed brow fraught with concern, but a "Well, I could've told you that."

My attitude towards medical imaging technology has changed radically in the past (almost) three years. Thanks to Maddy, I now believe it's wonderful . . . if you know what you're looking for. Looking for a fetus and heartbeat? There they are. Looking to see if there's a lump on the brain that corresponds with this strange feeling you have on the right side of your head? There it is. But I no longer consider it a useful diagnostic tool to scan and search and hope you find something . . . or hope you find nothing, as the case may be.

Before Maddy I too was caught up in the magic of ultrasounds -- the cute profiles, the ability to see some -- importantly, not all -- of my child's internal organs and make sure they were accounted for and in the right place. There's now doppler that can detect blood flow to certain organs. They can make sure the placenta is correctly positioned, and fluid looks to be abundant. And they can obviously pick up problems, too. I know many of you were told of the demise (or certain future demise) of your child via ultrasound imaging: the still heart, the organs pushed up into the chest cavity, the bulging brain.

But these are, how to put this, obvious problems that are evident when a wand is placed over your stomach and shoots back information to a screen. There is much that is not evident through this technology: ultrasounds cannot really "see" the umbilical cord (many of you may remember a technician pointing out "bubbles" on the screen, which compromise the cord). While they can take a headcount of most of the important organs, they tend not to search for less important things -- things that may be telling. But really, what it comes down to is: the technician is looking for a standard laundry list of problems. If your child has a problem that's not on the laundry list, it's likely to go undetected.

Which happened to me.

Due to bleeding well into my second trimester, a low lying placenta, ultimately an echogenic bowel, not to mention the standard NT screening and amnio, I had upwards of 15 ultrasounds through 32 weeks. They never found anything wrong with Maddy (save for the bowel, which disappeared by the follow up scan, and I tested clear of problems that could cause this). The technicians did their usual measurements, and went through the checklist of problems and always ended the session with "The baby looks great!" It wasn't until she was born that we realized her insides were a complete disaster.

But wait, there's more. When Maddy was alive, somewhere circa day two, she had an MRI. I will never forget the gaggle of doctors, young and old, huddled around the monitors discussing these pictures as if guest-starring on "House," completely oblivious to the fact that I was standing right there. (One doctor regaled us with stories of having to hand-bag Maddy -- they detached her from the respirator, obviously -- by lying down with his arm uncomfortably stretched out inside the tube.) They came to a conclusion based on these MRI images (which I had previously always held to be the "gold standard" of medical imaging technology), and told us her brain was malformed in a certain way. Children's Hospital read the same images and told us the same thing, and before she died they all led us down a street of potential diseases and complexes they were going to investigate based largely on this MRI reading.

And then they did the autopsy and discovered that wasn't at all what happened. Everyone, two institutions full of great, nationally-renown doctors, misread the MRI. Her brain showed something altogether different in person than it did via imaging, and thus the avenue of research was chucked. Because what was discovered at autopsy was so rare and weird, a new avenue has yet to be found.

I am not angry at these doctors by any means (she would've died anyway, and the MRI error only set them back a week on research), and I don't think anyone "missed anything." Nor do I "doubt" medical imaging on the face of it. I'm not going to stare at a strange blob on the screen and scream "No!" in absolute denial. I'm going to continue getting mammograms, but likely now at 50, and every other year unless a problem arises in the meantime.

But I am now painfully aware of modern medicine's limitations.

I recently got out Bella's and Maddy's ultrasound photos, and I was rather taken aback. What I remembered at the time to be outstandingly clear impressions of actual babies! Right there! Are those my cheeks? now seem to me incredibly blurry, hazy, ill defined-borders of blobs in a sea of dark. I understand measuring these blobs from one direction to another is useful information, but I also now understand that blob measurements don't guarantee that what lies inside is peachy keen. Maddy's spleen only measured 25 weeks -- an important clue that no one knew until she was cut open. She was blind, a fact undetected until birth. Her nervous system was liquified, and everyone missed it even when she was alive. Her heart was enlarged to the size of a six month old's, but this went unknown until it happened to stop less than 48 hours after her birth and was only confirmed in the pathology report. She was a full-blown metabolic disaster, but these things can't be seen unless you have a sample under a microscope.

My blind trust that bad things show up when illuminated evaporated. I'll never bravely wield my flashlight in quite the same way again.

Last spring I knew, standing there with my breast being twisted and flattened into a pancake, that this particular picture may not pick up what will eventually kill me. And that the lump it may detect may turn out to be something else entirely once tested. And I know if I'm ever pregnant again, that while I will want to be cleared of any surprises save the big life/death one at the end, and all the doctors will be eager to pull out their high-tech probes and search and measure now knowing a bit of what they're looking for, that it's unlikely they'd discover any of Maddy's problems in another baby until late in the third-trimester if at all. Most likely, problems like Maddy's would go undetected until birth. By which time, I'd still undergo a tragedy just of a different nature.

I no longer think of imaging screening as particularly accurate and to some degree, even useful. I completely get what the panel is saying about mammograms. I wish there was a magic wand to wave over people that would notify you of unseen cancers, lethally malformed babies, and everything else that lies inside awaiting to erupt. But for now, I deal with what's there as do the doctors, understanding that the information played on the screen is not remotely magic, or a "medical miracle!" It's a limited view inside a very dark and still mysterious place.

Has your experience with babyloss changed your view about doctors, medicine, or medical technology and if so, how? How much did medical technology play a role in your child(ren)'s death? If you decide to get pregnant again, do you foresee making any changes either in attitude or practice toward your care and screening?