Nitpicker

I am a professional nitpicker. I sift through documents, link them up to one another, count them, summarise them. Before my daughter died, I’d spent nearly five years analysing other people’s sad stories, their deaths, hospital admissions and operations, reducing them to numbers to be crunched. 

I treat them with more respect these days. Try to approach my computer with a bowed head and leave a little pause as a mark of respect before I attempt to weave these records into a palatable form. Because these documents, when viewed in their human context, tell some tragic stories. One of them is mine.

The strangest day of my life was comprehensively documented. Hospital records show my time of arrival in the accident and emergency department of the local hospital with back pain, the back pain that turned out to be premature labour. What should have been December instead one clear summer night in August.

The birth transcript from the next morning records the dates and times of my daughters' births. It looks like any other record, the hospital must spew out tens of these documents every day of the year. But the recorded birth weights cause something to catch in my throat.

There are a plethora of other documents, transfers to the NICU, treatments administered, the reactions of our daughters, our reactions. All meticulously noted down. Box files upon box files full of paperwork.

When I open my daughter's memory box, there seem to be two distinct categories amongst the contents. Little woollen hats, photographs of my hands stretched over her bruised little frame, photographs of her dead body cradled in the arms of my husband, her ashes. 

And formal documentation. Birth and death certificates, medical records, the paperwork that I must pass on should I ever have her ashes interred. 

Somewhere between these two imperfect, inadequate records sits my daughter's memory. All that is left of her is contained within that box. 

I have retained the slip of paper that informs the registrar that a death has occurred. Signed by the doctor who witnessed her death and decided what caused it. I quite like to think of that quiet, gentle man bringing the whole power of his considerable intellect to bear upon that question. That just for a few minutes, perhaps, she filled his mind as he disentangled the chain of events culminating in her death. A tiny, icy comfort. 

My husband and I had to take this small slip to the registry office. I remember driving there resentfully, sulkily, wishing that someone else could do this. Hardly believing that we were expected to. My introduction to the unrelenting world of parenthood a strange one but still one with an inescapable truth at its core, nobody else is going to do this for you, be your child living or dead. The buck stops here.

I sat in a chair over the desk from the registrar. I seemed to be able to view myself from the outside. I could see the registrar looking at a person who looked like me, who appeared to be holding things together but, in reality, I had been decanted somewhere to the right of myself, gibbering, trembling and translucent. I am certain that I was not the woman who sat in the chair and calmly handed over the slip of paper, the proof that her daughter had died.

Photo by Zach K

I remember that I wanted to sign for my dead daughter's birth certificate. But I couldn't bring myself to sign for her death certificate. My husband did that. He is listed as the informant on her death certificate. His qualifications for doing so listed as being her father and as being present at her death. Such dry little phrases concealing such a world of awfulness.

The registrar spelt one of the causes of her death incorrectly. I wanted to ask her to change it but I couldn't get the words out, they clotted in my mouth. Now the mis-spelling glares at me accusingly.

I left clutching those documents tightly in my hand, the only proof that I had not imagined her existence. Clinging to the sad, strange consolation that, should some great-great-grandchild go looking whilst researching their family tree, they would come across her.  

Seven months after my daughter had passed away, a receptionist in some far flung part of the hospital ‘phoned me. To ask if I would be bringing the twins in for their hearing tests. For a moment, the room swirled around me and I saw my thin, ghost girl alive somewhere. In a hospital filing system. Preserved there. Squashed between files like a pressed flower. And part of me didn't want to tell the woman on the other end of the phone that she was dead. Because I would have liked to maintain the pretence and she was my only co-conspirator.

When my son was born, nearly three years later, my husband and I went to register his birth.

"Only one?" asked the registrar, "Are you sure you aren't hiding a twin anywhere?"

She probably says this to every family that comes through her door. 

"No," I replied. "Just one."

But there is a hidden child in our family. She's been hiding for a long time now.

Did you have to complete any paperwork relating to the death of your child? Did it bring you any comfort or cause you further pain? Or did an absence of paperwork cause you hurt? Did you find any kind souls amidst all the bureaucracy? Or any callous ones? Have you had the disconcerting experience of someone in the 'system' contacting you assuming that your child was still alive? 

The thin (disappearing?) line

I'm sure you're all anxiously awaiting the new edition of the Diagnostic and Statistical Manual of Mental Disorders V (also known as DSM V, replacing DSM IV). You should be. In now-outdated edition IV there apparently was a footnote of sorts that made grief an exclusion to depression. In the draft edition of V however, the footnote is removed, and grief is essentially enveloped into the definition of depression. Which means, you, me, anyone who experiences a loss that s/he mourns (well, mourns deeply for more than say two weeks), will be thusly classified as suffering from depression. (To reiterate, right now V is in draft stage. The following discussion is on a possible -- but significant -- change in psychiatric diagnosis.)

If you've ever been hit up in a doctor's office by the quicky depression Q&A, you know it asks such things as, Do you have trouble sleeping? Do you have trouble focussing and making decisions? Has your appetite changed recently? And if you check yes to a certain number of these, you go on the doc's radar as being depressed. But if you're grieving the death of your child(ren), many of us probably answer yes to these questions, too. Have you lost joy? Does it take a great effort to do small things? Do you ever think about killing yourself?

So how to tell the difference between grief and depression? Is there a difference or is this a matter of semantics? Does it help or hurt our case when we say things like, "You never really get over it, you get through it and learn to live with it"?

There's an NPR news article on this shift in classification here.  According to this article, there is in fact a difference between bereavement and depression, but according to the doctor quoted therein it seems to be one of time: weeks. Not months, but weeks. If you're not rethinking some of those questions above in the space of 14-21 days, you will now be hit with a diagnosis of depression.

Huh.

Allen Frances has emerged as one of the lead critics against this particular change. Frances was the chairman of the group who devised DSM IV, and wrote an op-ed in the New York Times highlighting his concerns. (Op-ed can be found here; sign in may be required.) Among Frances' problems with the proposed change from IV to V are that healthy people who happen to be hit upside the head with a loss will now be labeled as depressed. Which is a problem if you're applying for health care or a job. Frances also worries that drugs will now be willy-nilly doled out to people in mourning, who either won't need them, or will unnecessarily remain on them. Frances writes,

Turning bereavement into major depression would substitute a shallow, Johnny-come-lately medical ritual for the sacred mourning rites that have survived for millenniums. To slap on a diagnosis and prescribe a pill would be to reduce the dignity of the life lost and the broken heart left behind. Psychiatry should instead tread lightly and only when it is on solid footing.

+++

I used anti-depressants, but they were not foisted on me by a doctor in the hospital. They also came later than two-three weeks. On the contrary, I went about a month or six weeks until it hit me one day that I was no longer functioning in a capacity that I needed to for the safety and well-being of my two-and-a-half year old. (I wrote about my decision to use anti-depressants here on Glow; the post can be found here.) I was also in the care of a psychoanalyst, and the decision to go on medication was entirely mine -- as was the decision to go off them in six months. They did not take away my pain or mitigate my grief. They did not put me in a fog, or even make me feel better. They helped me function. I still felt the awful full force, but could now drive and lift myself out of bed and otherwise make sure my toddler didn't play with knives while I hid under the covers.

Perhaps I'm different in that I actually sought help, and I'm wondering if there are babyloss parents out there who should but are caught in that whole "Can't make decisions" and "Small things are difficult" mode and don't pick up the phone to make that appointment. Or maybe I'm the rarity of which Frances speaks who actually needed treatment.

I'm a bit confused about the change from IV to V because it seems that there are already clear markers in place in order to make this distinction, markers that medical professionals are quite comfortable with. When I interviewed a grief counsellor for this site (interview found here) I asked her point blank what the difference was between grief and depression, and she gave a long and nuanced answer involving "normal" and "complicated" mourning, and the ability to "bracket" one's feelings later in the process and keep them somewhat separate from other parts of their lives. She also pointed out that it takes much longer than a few weeks to process loss and go through some of the more severe feelings. It seems to me this makes an enormous amount of sense. Are the people writing version V worried that psychoanalysts won't be able to do their jobs properly and discern these gradations? (Hey wait, aren't psychoanalysts doing the re-writing? Are they saying this is too difficult a job, or they can't be bothered, or what?)

Although I agreed almost entirely with Frances' arguments, I bristled a bit at " the sacred mourning rites that have survived for millenniums." Because I think babyloss is it's own little dark corner of bereavement, and I think we show here and on our blogs on a weekly basis that contemporary society has a ways to go before it wholesale accepts our particular grief as a healthy if not painful and uncomfortable process that people experience. Babyloss parents frequently speak of having no one to turn to or talk to, and in fact, document people turning and running in the other direction when given their news. God bless the internet, because places like this -- here, online -- have become a life-line for many who need to grieve and make sure they're in some bounds of normalcy. As we all showed a month or so ago when I asked for input on funeral services, there aren't as much "rites" as there is "getting through the moment to the best of our abilities." So where does this put us on the analytic scale? Are we difficult to place? So difficult that we might as well just lump us in the larger definition of depressed? I'm not saying because we as a group lack a cohesive and common social experience ergo we need Zoloft; perhaps this is a clarion call to examine babyloss more closely and for society to agree to abide and sympathize with us and give us the support that we so desperately need.

+++

I want to open this to discussion to the people whom it actually affects. You. And find out what you think.

But.

I don't mind anyone here getting defensive about being labeled depressed right out of the gate. Hell, I'm a bit pissed about it all, too. But I think we need to be a bit careful that our arguments against Draft DSM V's line of thinking don't play into any preconceived negative notions of depression, therapy, and anti-depressants. Society may not know how to deal with babyloss parents, but let's face it -- we're also battling a stigma of depression that paints its sufferers as weak. Weak and perhaps suicidal, delusional, or even alcoholic depending on what Lifetime movie you've seen recently. And there are people here, who read here, who have sought out therapy and used anti-depressants to their advantage, who have crossed that line between mourning and depression. Let's not take them down, too.

And what I'd really regret is slamming the new proposed change and taking down anti-depressants with it and then leaving a newly bereaved parent saying, "Well hell, I'm just grieving goddammit." And not wanting to eat his or her words two months later when they get knocked to the ground and are scraping the barrel because sometimes it's hard to make a decision, and sometimes its really hard to make a decision where you have to admit you were wrong about something, publicly. It shouldn't be that tough to ask for help, and to get it.

If I've learned nothing else writing and reading around here over the past few years, it's that everyone grieves differently. So I ask that in the comments, we're mindful of this.

So let's hear it. How do you feel about the proposed change that will essentially make grief a mental disorder? Semantics? Do you see a problem that could impact your life directly? Do you feel funny being labeled as such, or relieved that someone is even paying attention? Do you think you ever crossed that line between grief and depression, or think that you could? If you could address the people drafting DSM V, what would you tell them that you think might be helpful in making their decision? I realize many of you have already addressed this issue on your blogs -- please post a link to any posts in the comments.

Well, How Did I Get Here?

I know for many (most?) of you, the decision to have another baby after the death of the same is as innate and natural and "Well, DUH" as drinking a glass of water or breathing. In fact, I'd hazard a guess that for many it's hardly a "decision" at all, but a compelling force or internal drive. Or something.

And not that it's easy for anyone to go back down that road, but for some, like me and a few others in my shoes who have more than just "Well, that was just a fluke of (really fucking abysmal) luck, really" it's not quite so easy to jump back into the saddle. It is, in fact, a decision. Maybe you have some grim odds to contend with on the next go-round, or a few more rounds of reproductive nonsense ahead of you, or perhaps you're just scared out of your mind. Or maybe some ugly combination of those circumstances. In any case, rather unlike, say, Elizabeth McCracken who averred from her hospital bed -- freshly blown apart by the death of her son -- that she would (!) indeed have another baby, I loudly proclaimed from the NICU: "Hell to the No."

So it's rather sheepishly that I stand here before you, three years later, 23+ weeks pregnant. What happened?!

Someone here asked me recently how I did it, how I made this decision, what my thought process was, or how I otherwise found my way from A to B, and I thought it would be useful to dissect my route in case anyone else out there had to face similar circumstances. And yet I sit here with my hands levitating above the keyboard and burping up the trail of breadcrumbs I've unfortunately consumed instead of leaving for the next traveller, because quite frankly, I honestly don't know how I got here. I'll set my water glass down, now.

I can in fact point to a few issues that -- when refocused through my new sporty Grief Goggles -- altered a bit and allowed me to sit somewhat comfortably where I am now as opposed to where I was almost three years ago now.

The primary contributor to this shift, you'll probably be sorry to hear, is simply the passage of Time. I remember when I first stumbled out my door to walk the dog in a haze of tears and blackness, one of my neighbors said something stupid like "It will feel better with time," and I wanted to punch her. (And oh my god, is she ever one of the sweetest women who said and did some simply lovely things for me a few days later.) But it turns out, it's one of those trite little sayings that I now agree with, I just think I should have the power to say and not a bystander.

Time does help. For starts, Time gave the doctors opportunity to fully and completely research what on earth happened, the results being: They have no fucking clue. But. They ran (and I found out last May continue to run) Maddy's samples through the Genome project multiple times, and presented her case at conferences, and with each day (month, year) that passes without a genetic hit, it looks more and more like the Ockham's Razor death rationale: undetected placental abruption and/or infection. Because the odds of a never-been-seen before autosomal recessive fuck up between two people from different ethnic backgrounds are apparently outstanding. And not to say our luck isn't piss poor, and those recurrent odds for the abruption/infection aren't daunting, but sure beats the hell out of 1:4.

But you know, the geneticist could still be right. And again, here's where Time has helped to an amazing degree: I have transformed from a pre-Maddy cautious optimist, to a post-Maddy pessimist, to a neo-post-Maddy realist. I no longer think in terms of odds, nor do I "hope" or "wish" or envision things. I now rely on the basic premise of probability, stripped of statistical odds: Either something will happen, or it won't. Either the baby will live, or it will die. I will get in a fatal accident on my way to buy groceries, or I won't. The chicken will catch fire under the broiler, or it won't. And I know for many such an oversimplification probably reeks of negativity and a 50/50 coin flip, but for me, in my circumstances, it has been remarkably freeing to simply let statistics go and deal with the end game. I used to mull over things like genetic testing risks for example, and now I simply throw my hands up: Either it will be fine, or it won't. (I did decide on genetic testing because I don't want any surprises this time around except for the big one at the end, but I certainly didn't sweat the odds of problems arising from said testing.)  And you know, if it isn't, I've been there. I've hence liberated myself from months of stress over minutia, and will simply wait until the end to find out what's going on. Thankfully, I'm a patient person.

Which leads me to Time and the fear factor: I was so completely afraid after Maddy died that I couldn't have sex let alone think about eventually bearing another child. And there was a time after I climbed online and realized all the other ways in which babies die when I wondered how we exist as a species, and how I could ever be talked into that again. I completely understand people who almost grow more fearful rather than comforted after reading other blogs -- just think, you could escape problem A and fall head first into problem B. There are those here who have lost babies more than once. Support groups can be sobering reminders that lightning indeed strikes twice.

But enough Time has passed that frankly I feel as if I now know all the ways in which babies can die (or at least the big group headings -- sometimes the subgroup can be a surprise). As I wrote to someone recently, I recognize all the bogeymen now. It's not that I feel immune to them, or don't think they won't pop up, it's that I no longer fear them, and they won't surprise me. I see them, lurking there around the corner, and in that way they've totally lost their power. Should one jump out, I'll say, "Oh, it's you," and know exactly who to contact for support. I've mentally walked my way to the end of almost every bad dream, and I'm strangely very comforted by that.

I want to put in an aside here that is too important for parenthesis: Some people here are dealing with the odds and the fear that not only will future babies be at risk, but their own lives as well. There are women reading here who (sometimes barely) averted death due to preeclampsia (and other complications), and the odds of recurrence of that particular problem go up steeply. I consider myself thankful that when I ponder my outcomes, I am alive at the end of each -- in fact, it was a huge factor in my ability to move forward. My worst case scenario has already been lived through, and I feel confident that I can and will make it through intact again should I have to. Others do not have this luxury of (at the very least) being able to envision themselves at the end of a process that goes horribly awry for the second time. And that is a whole other debate and discussion and risk taking endeavor that Time probably does nothing to ease. If you've had to make a subsequent decision that involves your life, I -- and I'm sure others -- welcome hearing from you in the comments.

Back to my final breakthrough: Enough Time passed that considering another child became it's own debate, not one necessarily connected anymore to the discussions we had about having another prior to Maddy. This was both a blessing and a curse as it turned out. We had moved since the last decision was made, we have new social lives, Bella is older and our parenting has changed dramatically along with her needs.  Thus, it was easier (and sometimes actually fun) for three of us to move as a unit, and yet it was also easier to imagine going through a (probably) stressful/problematic pregnancy.  We had come to the place in our hellish aftermath where we felt like doing things again: traveling, eating out, relishing time for the three of us, for the two of us, for me. My grandmother died last summer, and I saw my mother and my aunt work and grieve together and realized I wanted to at least try to give that to Bella -- no one should have to to deal with a senile me by themselves. And in that way, in this jumbled mish-mash of plusses and negatives, I feel as though this child within me now -- should he live -- will be his own person, with his own identity. He was discussed and planned and brought at least this far for a separate set of reasons, through different rationales. He will always be connected to his older sister -- it's hard to say if I would have had a third, and yet it's hard to say I would have ever had another.

I am not kidding myself here -- this will work, or it won't. I cannot claim to be learning anything about myself five months in, nor am I undergoing emotional shifts in my missing because I am pregnant, but frankly that's not why I decided to try and get pregnant again. I did this simply because I wanted another child of our own genetic make-up, and we'll know if it was a good idea -- or not -- come mid-May.

Did you decide to have another child after your babyloss, or was it more of an instinctual feeling that really didn't warrant discussion or debate? If you did have a decision to make, what went into your decision? How much time passed? What were the mitigating factors? What if anything shifted inside of you (or happened externally) to make a subsequent pregnancy possible? Did any of you decide "Hell no," and remain in that place?

Of Birds and Bees

We all bring a set of issues to the table of grief, whether it be a side-dish of marital problems, a salad of anxiety, or an appetizer laced with previous tragedies which this seems to compound. There's the bottle of money woes, the dash of low-esteem, and perhaps even (hidden under the napkin) the telltale odor of previous bouts with depression. All of these shade and color our experience, and shift our individual abilities to cope with babyloss. I'm not here to rate which are at least edible, and which could stand to be thrown into the compost, but I am going to discuss one particular problem many bring to the table and set down with a thunk, with the grace of an overcooked, 25 pound stuffed turkey.

That would be infertility.

Babyloss after -- during -- infertility is it's own peculiar injustice. For starts, infertility in and of itself can create it's own side excursions into mental trauma. As one avid reader here said to me in person recently, infertility is its own kind of grief.  For starts, what comes naturally in the pickle commercials and to your friends who seem to just look at each other naked and procreate, for you is not meant to be.  Frankly, that alone deserves some mourning.  There's the monthly reminder of failure, which you try hard not to internalize, but it's hard to go through more than a year without getting a bit mopey about overall body image and capabilities. Add to this the strain on marriage, which you try and avoid by making sex fun! And unto itself! But seriously, you're both eyeballing the calendar and know and wonder when it will be fun again, and secretly debate who exactly is letting whom down. Meanwhile all of your friends are pregnant and having babies and wondering what in hell you're waiting for? Time's a ticking! You go to your thousandth baby shower with a stiff upper lip and cry on the way home.

You finally go to an RE (that's Reproductive Endocrinologist) who runs you through a pantheon of testing. If you're lucky, you've climbed online and read up on this stuff so you're prepared for the discomfort of mulitple blood draws on various days of the month, watching radioactive dye run through your fallopian tubes, or having your uterus filled with liquid and monitored via ultrasound, or an uncomfortable uterine biopsy. There's the indignity of going in on day two of your menstrual cycle for a vaginal ultrasound to check the status of your ovaries, and the ever-popular post-coital testing where you run into the office when you should be lounging naked with a glass of something and a cig, and have them take a sample of everything that you didn't leave on the mattress to see if sperm can indeed make it through the secretions that you produce. And don't get me started on the discussion with your husband, which starts with "Honey, I really want to have a baby" and ends with "And so you need to go into the office where they'll hand you a jar. If you're lucky, this office may even have some inspirational magazines for you as well."

And that's just to get a diagnosis. If there is one to be found. Like so many things medical, after all of this, the answer is often "unknown."

Because now we know, maybe, or at least have an idea, there might be surgery to rid of endometriosis or fibroids or a blocked tube. Or IUI (Intra-Uterine Insemination -- you know, the old fashioned way, except with a turkey baster). Or if your husband presents a problem in the equation, IVF with ICSI (Intracytoplasmic Sperm Injection. Say that 10 times fast). Drugs are dispensed, often to yourself with syringes and detailed instructions on what needs done intramuscularly. Sometimes you skip right to IVF (In Vitro Fertilization), and sometimes there's a mind-blowing discussion about dead or absent sperm or a lack of eggs or a misshapen uterus that ends with the RE telling you about gamete donors and/or surrogates. Sometimes there's the unexpected surprise that all of these miscarriages you've been having are caused by a genetic problem carried by you or your spouse. Sometimes there's simply a vial of pills, sometimes there's the fluke of luck while waiting for the next round of shots to start, and sometimes there's the hellish conclusion that this will not end the way you intended when you walked in.

I should pause here and remind people who are staring at this jumble of acronyms and procedures like hieroglyphics that much of this testing and prodding and medicating and inseminating is not covered by insurance. Unless you're lucky enough to live in a small handful of states (or countries) that have rightly deemed infertility a medical problem necessitating treatment and hence coverage (and you're lucky to have insurance to begin with!), you're paying for this out of pocket. According to Resolve, the average IUI runs $865, depending on the medication needed; IVF's average (that's average) $8,150K, NOT including medication (which runs, on average, an additional $3,000-5,000). (For the record, I just used some banal progesterone, apparently necessary to keep embryos attached to my uterus but not covered by my insurance. The cost per 4 weeks of a daily single dose was $800, and I needed 8 weeks. And I consider myself lucky that's all I needed this time around.)

I know people who took out second mortgages for ART (Assisted Reproductive Technology), and people who used inheritances, and people who drew out of their retirement accounts and/or borrowed from family. All to achieve what many can do after turning off the late night news and climbing under the covers.

But let's say you get lucky, and get pregnant.

Worth it, right?

And now let's say your baby dies.

:::

Back up for a moment to what this reader said to me: Infertility is it's own kind of grief. It's a monthly dash of hopes, a monthly reminder of promises gone down the drain, often with the checking account. It's the thought when an embryo is tucked safely inside you that this is it! This is life! This is our life.  This blob will be my child! Only to be greeted by one line and blinding white two weeks later. Multiply this over, and over again. Possibly for years. Possibly having set your limit -- your emotional and financial finish line on the next attempt: this one is the last one. This one works, or we grieve never having children of our own, and move on to something else. Hope and faith and trust and marital communication may have left the building long before the death of a baby. You may have been desperate, on that last attempt, bargaining, wondering if anything would work.

In that regard, the death of a baby is part of this winding vine already invading your life. It's another loss, another dash of hopes, but this time on a much larger scale because . . . well obviously, it's different to hold a dead child than to stare at a negative pregnancy test, but there's also the thought that That might have been it.

Because you can't simply wake up one morning and say, Let's try again. As hard as that discussion is to have another baby after the death of the last, if you're infertile it's more complicated. There isn't the subconscious knowledge that Well of course this will work again like it's supposed to.  You need to pick up the phone and explain to people what happened, and what you'd like to do next. You need to go through a lot of the rigamrole again. You may need to alter how many embryos you transfer, or depending on why your child died, move to gamete donation or surrogacy. Perhaps you need to now fork out for PGD (Pre Implantation Genetic Diagnosis) (Incidentally, another average of $3,500 on top of your IVF expenses) to make sure any genetic problems aren't being passed along. You need to set to set a new limit, a new finish line, and further deplete your bank account. And each month that passes with an HCG (Human Chorionic Gonadtropin) test of two or less, you sink further into a bleak place. Perhaps that child was it. The only time this would work.

And sometimes, that is it. There are people here in this community, who read here, who reached the end. The end of the line. The money tree dried up, their emotions were frayed after years of trying and failure, and they needed to stop and move on. Move on with another life than the one they originally envisioned when they simply set out to have a baby of their own making. And that, putting behind not only a dead child but the attempt to have another of your own, is it's own crucible of grief. Inextricably wound up with the death of a baby that we're all familiar with, but branching out and encircling so many other parts of your conscious and marriage and identity and being. And like any loss, this deserves its own moment of grief, too.

Did you seek Infertility treatments in order to get pregnant with your child(ren)? Are you having to with a subsequent child? For you, how does your babyloss fit in with infertility -- does it stand alone, or has it become a chapter or branch within a greater struggle? Do you have limits? Have you met them already? 

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?

yours sincerely, the clinical genetics dep't.

"The cause of her demise was early onset cardiomyopathy."

Commonly referred to as DCM. The knew from day one what was wrong with her heart. They credited my instincts for sensing something was off, for bringing her to the A&E that morning. I was worried about her loss of appetite. Never in my worst nightmare did I envision we'd end up riding to the children's hospital in the back of an ambulance by mid afternoon.

They also told us that day that they would likely never be able to tell us the underlying cause.

Unacceptable. Horrifyingly unfair. You are DOCTORS. Giving me the information I need to help her get better is your JOB.

We had absolutely zero control over the situation from that point forward. She struggled for the next week before we lost her after the longest night of our lives.

"I am pleased to let you know that again, no abnormality was identified. Whist this is good news, it leaves us with an uncertain situation once again."

That's it? That's ALL you can give me? After a year of candidly discussing how much of her DNA was left, your desire to preserve the precious reserves in the event that some discovery was made? THAT IS MY BABY you're talking about in goddamn remaining measurements, for the love of all things remotely sensitive.

"We have tried to explore the possible options as to the aetiology of the cardiomyopathy identified in Sadie and we remain without a definitive answer."

Then honestly? What the fuck ARE you good for. Honestly.

"This means that we are left with a small residual risk of similar problems happening again in any future pregnancy."

A small residual risk. How do I wrap my head around 'a small residual risk' as it applies to the life of my child? I can wear a helmet. I can tell him to put a condom on. I can wait for a green light before crossing. What can I do to mitigate the risk of going through it all over again? Much more importantly, putting another child through it all over again?

"I would advise you to contact me when you confirm a pregnancy at home in order to enable me to arrange the relevant scans for you."

Well if I were you Honey, I wouldn't go out and buy stocks of Clear Blue Easy any time soon. Trojan, perhaps?

.::.

I'm going through a bit of a bitter phase lately. I hate that I still get angry at the world, but it's still there, simmering right under the surface. It gets worse the more I put pressure on myself to gather the proverbial balls and start taking folic acid.

I like my questions to be answered, and I typically 'need' to make my decisions from an informed point of view. If I'm being really honest, I regularly wonder why it couldn't have happened to someone else. Someone awful and cruel. Someone who 'deserved it'. 

Without the control I would normally exercise in another paramount life situation, I am left feeling weak. Feeling weak piques my temper. I'm not proud of this, but there it is. As I work to not let it seap through the seams to stain the relationships in my life, I wonder how thousands of other parents in our situation have learned to deal with the same situation.

.::.

I think this time around I am asking for help.

I would really, really love to hear from parents who have been through experiences with genetic counselling, whether your results were definitive or inconclusive, like ours.

I would really, really love to hear from parents who went on to have more children despite the risk of a recurring condition.

.::.

If your loss was due to a potentially genetic condition, how did you deal with the decision to try again? Were you able to put the stats from your mind and forge forward with hope? What did you find helped you in the process?