National Pregnancy and Infant Loss Remembrance Day

Today is National Pregnancy and Infant Loss Remembrance Day.



(A click will take you to information re: the House Bill on Stillbirth Awareness.)

And as I told Mr. ABF, seeing as I've now lost one of each, I need to pony-up: I'm wearing my pin, and lighting a candle this evening at 7 p.m.

Remembering Maddy, and all of yours. Always.

Words Unspoken

Me: (pausing in the middle of one of our favorites, John, Paul, George, and Ben) Did you know that Benjamin Franklin used to near live here? Would you like to go see his house some day?

Bella: Is he dead?

Me: Yes, but sweetie, he was very old when he died, and he died over 200 years ago.

Bella: I'm going to live forever. (Pause, eyes rapidly fill up with tears) Mommy, am I going to die?

Me: We're all going to die, love. But hopefully not for a very, very long time.

Bella: But I'll miss you when I die.


***


Bella: Mom, what does a brain look like?

Me: (pulls up a picture on the computer): like this, pink, kinda mushy and squiggly. Here's a map of what all the different parts of the brain do. (I touch her head to roughly correspond with what is responsible for seeing, hearing, memory, language.)

Where did you hear about the brain? Did you talk about it at school today? Hear something on tv?

Bella: No. So it would be bad if I hurt my brain, wouldn't it.

(We've never, to my knowledge discussed Maddy's medical problems in front of Bella -- at least not intentionally, and the last phone conversation we might have had where we were doing the talking would've been a year ago August.)


***

Bella: (pointing at my stomach) Mommy, do you have a baby in your tummy?

Me: No, no I don't.

Bella: Then why are you fat?


***


Bella (at breakfast, out of the blue): Mom, when are you going to have another baby?

Me: I don't know. I don't know if I will have another baby.

Bella: Why. (Delivered more as a statement than a question)

Me: It's . . . Because I'm old.


***


Bella (While baking apple cake, again with no segue): Mommy, when are you going to die?

Me: I don't know. Hopefully when I'm very old.

Bella: (voice catching) When am I going to die?

Me: I don't know. I hope when you're very old. Hon, I know it's hard (BELIEVE ME) to think like this, but we can't worry about it. We need to enjoy just being alive, right now. If we keep worrying . . .

Bella: Mom

Me: . . . we won't be happy . . .

Bella: Mom!

Me: . . . maybe you can let mommy worry about it . . .

Bella: MOM!!

Me: Yes?

Bella: When are you going to have another baby?


***


I remember like it was yesterday, sitting knee to knee across from the social worker at Children's, who was sent to talk to us about Bella. This, 2.5, is the hardest age, she warned us. Any earlier, and she wouldn't remember. Any later, and she'd have some verbal ability to express her emotions. She's going to grow into this grief. One to two years from now, it's going to come up, when it's inopportune, when you least expect it, she's going to start talking about it. That's ok. That's normal. Just know it's coming.

***

The conversations have been coming fast and furious lately. Out of nowhere, the eyes pool with tears, and suddenly Bella and I are hugging and I'm dredging up words I never use anywhere anymore: "I hope." "Hopefully." But I'm never definitive, never emphatic. I stifle my tears because I want her to know she can talk to me about these things without the fear that she makes mommy dissolve.

And there is an obvious connection that is not lost on me.

School has started, and this year Bella attends five days in a class with 16 or so precocious four and five year olds. At the beginning of the year, two mothers were incredibly pregnant. One, according to the happy notice pinned outside her classroom next to the snack sheet, had a baby girl a week or so ago (and named her, much to my chagrin, after one of my favorite bloggers here. It's a peculiar stab in the heart to see that name on that sign every morning). "Please help us in welcoming X's sister!" I wonder what that paper would've looked like had Maddy been born in the school year. Black, with white writing? Perhaps a crayon drawing of a lily? But I digress: there has been an uptick in discussion of all things pregnancy and siblings and babies. "So-and-so's mommy has a baby in her tummy," Bella announced. "So-and-so has a new baby sister."

We've had discussions with Bella since February '07 on Maddy. And on death. The former trend towards lilac bushes and bracelets, identifying her in pictures and "remembering;" the latter on hearts shutting down, inability to breathe, loss of bodily functions (like eating and running) and the esoteric notion that all living things die. These discussions are always on her timetable, at her discretion, with her permission. But they have been on two separate tracks -- Maddy here, death there -- until now. The rivers of thought have finally converged, and suddenly out of nowhere there are profound discussions on death, siblings, and life all mashed together over a semi-soggy bowl of cheerios, during a cute history read-aloud, or while I'm peeling apples. There is no longer confusion: Her sister, her BABY sister, died. She, Bella, will die someday too. We will all die. Living things die. But we are alive now, and her friends get to bring home LIVE siblings, so why shouldn't she?

***

Last Friday evening, Mr. ABF and I attended the pre-school parents wine/cheese get-together for Bella's class. All well and good, until the host's husband (who is eternally away on business) asks Mr. ABF if Bella is our only child. To which he responds "Yes." And I hear the regret on his voice while the word is still hanging in the air, and I look down and feel . . . .guilty. I'm so tired of this. I'm so tired of hiding this part of my life, I'm so tired of tip-toeing around others' sensibilities. While our hosts drone on about "Woo boy, we would've NEVER had another had we known what we were in for --- our first was wayyyy to easy!" Mr. ABF shoots me a mental "I'm sorry," and I telepath back that I most likely wouldn't have had the mettle to bring down an evening right from the start, either.

Later, there's a 20-minute discussion where everyone chimes in on how at one point or another they "forgot" their second child -- in their heads, in their arms, in the car -- and through the laughter, Mr. ABF and I mentally prop each other up and wonder how in fuck we're going to get through a lifetime of these inane conversations. We're like aliens standing there, listening to a room speak in Swahili while we stand on the perimeter missing the punchline -- and always will be.

I don't begrudge these people their stories -- hell, I'd be one of those parents that left a kid in a grocery cart -- I just wish I could add to them. But I either have the easiest second child on the planet seeing as how her remains neatly fit into my purse and can be left at home on the shelf while we go to the beach for a week, or the hardest to forget. I'll never forget my second child. She's the fifteen-pound ring around my midsection, the downward gaze of my husband, the circles under my eyes, the bracelet on my wrist. She's the wall between me and every parent in this room. She's the reason I'm choking down my wine with a stony expression. She's the reason I have heartbreaking discussions about death with my child -- anyone else having those?

And we say nothing. Everyone is laughing, dressed up, enjoying time away thanks to the babysitter. We collapse in the car on the way home, grateful to be out of the lion's den, and yet rueful that we missed another opportunity to introduce people to our normal. To our children. It is utterly exhausting to be in public. Still.

S.3142 and H.R. 5979 regarding Stillbirth

Last year, or any of the years previous, I didn't even know that Pregnancy and Infant Loss had it's own day, let alone a whole month. I found out, perhaps not surprisingly, from a lovely NICU nurse.

This year, the wonderful Antigone has spearheaded a movement to raise awareness about the day itself, and in addition, Senate Bill 3142: "Preventing Stillbirth and SUID Act of 2008." (The complimentary, but not identical bill, in the House is H.R. 5979. Those of you who remember School House Rock know that a bill must pass both the House and Senate before going to the President to be signed into law.) I know we're all desperately trying to wrap our heads around the subprime mortgage crisis (funny yet explanatory slide show here), cramming small bills into our mattresses, burning the window trim, and fashioning clothing from our draperies, but it would be nice if on Oct. 15th -- for a few minutes of one day -- the esteemed Lawmakers could focus on this issue.

I'm not hoping, I'm just sayin'.

(Also, might I add here, I explain some of the differences between these two bills below, but the Senate Bill is being sponsored by none other the the IL-D, Senator Barack Obama. Talk about the possibility of national awareness. So instead of only calling about the House Bill as the way below call to action suggests, I'm going to plug the senate bill by calling my senator AND the Obama HQ, and I encourage you to do the same -- in addition to calling your representative about the House Bill.)

I've been hesitating putting the whole shabang on the blog here until I read through the Senate bill itself, and I finally found a few minutes to do so. (Let's see if I can drum up a few more minutes and write about the damn thing.) I have some issues, which I'll relay below, but nothing that shouldn't be addressed to my (or your) senator when calling to voice my (your) support.

I'm not a stillbirth mom, but I could very well have been, and bills like this in the future may help moms like me. Let me explain.

For starts, the doctors told us on numerous occasions that Maddy's problems were so severe, that she really shouldn't have made it to term, let alone six days after. Which means, my six-day NICU experience was separated by the familiar ultrasound-with-no-heartbeat experience by the flimsiest of dividers. I could've been there.

As it is, I'm not, and Maddy's situation would not be applicable, but the results of this bill could very well have helped our doctors find a reason or at least eliminate some. The crux of the bill is a registry of sorts for that will amass information on stillbirth by establishing protocols for autopsies and the placenta (!). Other standardized factors of post mortem can be entered into this database (and here I'm assuming these would be questions posed the mother and doctor in addition to a pathology report, OR in the event that the parents decline an autopsy for whatever reason). The bill also places emphasis on "awareness" -- which may become more useful as the database increases. But I'm also assuming "awareness" includes PSA's on the database itself so that should a mother find herself in this unfortunate position, she (or her doctor) may already be aware that they help the greater cause (so to speak) by agreeing to participate in supplying information. My hope is that this becomes like organ donation, where people are less squeamish about autopsies knowing that something good may eventually come out of it all -- even if it's not their child's case specifically.

How would this have helped me? There would be an enormous pile of steaming hot data to compare my experience with. Our babies may have looked remarkably different on the inside, but what if our placentas (palcentae?) were not dissimilar? What if we both experienced a similar, unremarkable symptom at 25 weeks? Furthermore, the hope is that this study will actually find a link (or two) and suggest some diagnostic tools and safeguards for all women. You know by now my serious reservations on ultrasound technology as a diagnostic tool during pregnancy, but what if there was something else? What if someone designed a test of some sort for the 20th or 25th week to check for infection? Or realized that at week 28 they should zoom in on an particular organ that had been determined to show the first signs of distress? Anything??

What I like about the Senate bill: There's much to like. For starts, I like that the tone indicates we know a bit about stillbirth, but most people in this situation are left with no answers. Which means there's work to do. I like the coordinated effort and the acknowledgment that simple public awareness is needed and deserves funding in and of itself.

What I'm not crazy about: For starts, passing the buck on the defintion of "stillbirth." I'll go into this more on the House Bill (see below) but this, right here, is where things could get really sticky.

Also, with all due respect and sympathy to those who have lost children to SUID (including SIDS), I'm not sure I like that cause bundled with this bill. The two may very well be linked, but I think stillbirth needs a stand-alone bill, with a dedicated money pile and focus before we start making links like this. Not to mention, I think most parents are now aware of problems like SIDS and the more obvious risk factors (the Back to Sleep campaign has been quite successful). Are there still questions to be answered in this arena? You bet -- I'm sure there's nothing quite as devastating as finding your three month old dead one morning, even though you followed all the rules. Nothing like an ad campaign to label you an imbecile who was clueless about crib bumpers and tummy sleeping when in reality, your child's death remains a mystery. But I believe both of these issues need their own champions -- they are both important enough.

Finally, the wonderfully smart Julia alerted me that the NIH has an ongoing, long-term stillbirth study that is still in progress. It would probably behoove not only the authors of this bill, but the ultimate implementers, if this study were completed and in hand before moving forward.

As for the House Bill: I like that the House Bill stays focussed on Stillbirth. However, I'm a bit confounded that they're trying to push through the Certificate of Birth Resulting in Stillbrith in this version. This, my friends, is where things get hairy. It's not that I don't think parents deserve and need this piece of paper, because by God, they certainly do. (They deserve a helluva lot more, but validation of their children's existence is a nice start.) But no one to date has been able to settle on a definition here that doesn't open the door to the anti-choice movement using the bill as case-law and taking things in another direction entirely. As I commented on Antigone's blog, I'm distressed that deadbabies have become political footballs like this, but someone smart (like Julia!) needs to craft this language in a way that is careful and meaningful. Certificate of Birth Resulting in Stillbirth bills have failed on the state level in NY and NM because pro-choice representatives (and in NM, the governor) found the language vague enough to be dangerous.

I'm troubled because I would hate to see the idea of a national database torpedoed because people can't agree on the vocabulary behind and for this certificate. On the other hand, I'm somewhat cheered because this House Bill is co-sponsored by some very progressive, pro-choice representatives, so maybe -- just maybe -- they will be the ones to knit together just the right adjectives and terminology to make sense, and validate the children involved without turning them into launching pads for someone else's cause de jour.

In sum: database good. Extraneous stuff possibly bad, would like people to stay focussed on the issue at hand.

*******************

I now ask if you haven't already discussed the bill OR NATIONAL PREGNANCY AND INFANT LOSS AWARENESS MONTH/DAY on your blog/website/myspace page that you please take a moment for us and you to state the following as per Antigone:

October 15th is National Pregnancy and Infant Loss Remembrance Day in the United States. More than 25,000 children are stillborn in the United States every year leaving mothers, entire families and communities devastated. Estimates of the rate of occurrence of stillbirth make it at least as common as autism.

Stillbirth is not an intractable problem. Greater research would likely significantly reduce its incidence, but good research requires good data. H.R. 5979: Stillbirth Awareness and Research Act is under consideration by Congress. This proposed bill would standardize stillbirth investigation and diagnosis, thus providing more data for the needed research. Better research means fewer children born still.

On October 15th, remember the thousands of unfinished children lost and the families who remain to grieve them. Honor them by taking action. Let's help pass H.R. 5979.

Action Steps:

Step 1. Use Your Blog to Enlist Others
-Copy the contents of this entire post and publish it on your blog immediately.

GOAL: Enlist 10 of your readers to spread the word

Step 2. Use Your E-mail to Enlist Others
-E-mail 5 bloggers and ask them (nicely and in an unspammy way) to publish these action steps on their blog. Consider contacting celebrity bloggers, political bloggers, medical bloggers, or bloggers who are not part of your reading community.

GOAL: Enlist 3 bloggers outside of your normal blog sphere to spread the word in other online communities.

Step 3. Help Pass the Stillbirth Awareness and Research Act
-By October 15th, publish a post on your blog supporting H.R. 5979 Stillbirth Awareness and Research Act. For maximum impact, title your post: "Stillbirth Awareness and Research Act."

Forward Progress

It wasn't the most peaceful of outings.

Sure, there was the gurgling creek off to the side, the occasional rustle of leaves, the sound of birds, the whir of bugs. There was a brilliant blue sky, the layers of green surrounding me, the sound of feet on dirt. There was a hint of that lovely fall smell, with just a touch of crisp in the air, the damp soil and soggy leaves the morning after a night of rain.

I was paying so much attention to my new stopwatch, fumbling with the tiny buttons, making sure I stuck to the prescribed program de jour: eight minutes running, two minutes off, four reps.

I ran outside.

A few months ago, the trainers agreed it was time to run. So I hopped on a treadmill, ran for 30 seconds, followed by 30 seconds of walking, and repeated that four times. I came home and iced my foot and started second guessing whether I should've had that surgery after all. I rested a few days, came back, and tried again. It was so incremental as to be frustrating -- like learning to drive stick after you already know how to drive standard. Moving, but not; feeling terrific followed by that creeping, nagging sensation that your heel is starting to burn. When you've run a marathon, getting maxed out at 30 seconds for a total of 4 minutes of movement on a stationary machine is brutal. Outside the window the kids were walking to school and every one of them seemed more mobile than I.

But I did it. And gradually worked my way up through their program -- 1 minute running. 2 minutes, up to 12 times. 4 minutes running with walking breaks. And when I hit eight minutes running, they said I could go outside.

I missed everyone out there on my route -- the other runners, the long-distance club from the college, the walkers, the bird watchers, the tourists, the dog walkers, the lone equestrian. I missed what I've dubbed "the men's walking group" -- a gaggle of men circa 55-70 who walk in a pack, jawing about sports. Last year, they used to all wear sports sweatshirts, and break their conversation to holler a cheery g'morning to me. Yesterday, with their T's, they resembled an Obama bloc canvassing for that elusive squirrel vote. "How ya doin!" "Beautiful Morning!" I could almost hear them say, as they looked at me somewhat inquisitively, "Where've ya been?

Or maybe that was me.


"Wassup." (always said more as a statement, than a question.)

"Beautiful woodpecker up there at 2 o'clock!"

"Don't mind him, he's friendly!"

[silent head nod, clearly wrapped up in their iMusic]

Almost exactly a year ago this week, in a mad effort to burn my pregnancy weight and rid myself of this sad, saggy reminder around my midsection and hindquarters, my foot collapsed. The plantar fascia which runs down the arch had begun to separate from the point where it attaches to the heel. Yesterday I ran four or so miles. I'm a bit stiff today -- stiff enough that I'm resting my heel completely, simply stretching, wearing my arch supports. Hopefully tomorrow morning I can try this timed segment once again. If I can do it twice without pain, I graduate to running continually with no walking. Just running. Letting my mind flit instead of monitoring my watch.

***

Here comes that serious-looking runner guy again -- the one with the compact body and the serious clothes and the serious sunglasses. We said our good-morning's at the first pass, but I never know what to say when I pass someone for the second time going in the other direction.

"Have a good one!" he said, raising his hand.

I hope he didn't see me spontaneously break out into an enormous shit-eating grin.

"Thanks! You too!"

Because it doesn't just happen to people like us

Just read that Matt Bryan't son Matthew died suddenly and inexplicably yesterday morning. He was three months old. Bryant is the place kicker for the Tampa Bay Buccaneers, and from another news article I gleaned this bit of information:

Last November, the March of Dimes Florida Bay Division named Bryant and his family an ambassador family for raising awareness and funding for efforts to prevent birth defects, premature birth and infant mortality. Matt and Melissa Bryant's first child together, Tre, was born prematurely in 2006.

Thinking of them all.

Be Ok

A little dedication to all of y'all. You know, those who don't want to be ecstatic or joyous or over-the-moon -- those who just want to, well, be OK. Just ok.

Ingrid Michaelson BE OK

Getting Past the Beginning

Mom, is that my baby sister?

No Bug, that's a sick baby in China.

My baby sister died. I want a new one.


*****************************


Although I'm clear of guilt in the process, knowing full well there's nothing I could've done, that's not exactly true.

I had 14 or so ultrasounds through 32 weeks, and all were fine. I know now that you can't see liquified white matter or lethal proteins or glaucoma on an ultrasound.

I did my kick-counts daily. And although Maddy was less active than Bella, she passed every single one. I know now some of these may have been seizure activity.

There was no time -- absolutely no time -- at which we could've delivered early and saved this pregnancy. If the one doctor was right, she was on a track headed in the wrong direction from conception. If the other doctor was right, she was gripped by infection around 25 weeks. If there's a future pregnancy, there is no point at which I can relax, no date which I can squarely wrap my head around and figure "That's it. If I make it there, and she's still kicking, she'll live." That date will be labor, and I'll find out shortly after a baby's removed from me, when a doctor gingerly tries to peel back an eyelid to see if the corneas are clouded over, whether that child will live or die.

I had amnio, it was perfectly normal.

I don't stay awake thinking that I should've called about that abdominal pain, or I should've pressed harder on a certain ultrasound reading. There were no signs to be had. I sought medical attention regarding the bleeding and the low-lying placenta, and the result was always the same: The baby is fine. I don't worry that I should've delivered her earlier -- I would've wound up exactly where I am now, just with a different set of dates to mourn around.

There is no point at which this train wreck could've been avoided.

Except the very first step: the phone call. Picking up the phone to call the RE, and explain in an attempted cool voice that yes, I'd like to try this again.

I did not remotely enjoy my pregnancy, and I'm very sure that to the extent babies are aware in utero, Maddy probably didn't enjoy it much either. And the only thing that could've prevented this entire mess, was not picking up the phone.

I explained to someone last week that I'm the kind of person that likes to at least explore things, say things, just so I know -- so I don't go through the rest of my life thinking What if. I went to visit all of the colleges I got into, even the ones I hated on sight, because I didn't want to stay up nights thinking Would I have been happier there? Did I make the right decision? I always got what was on my mind about a boy off my chest even if the answer was No, thank you, or in the case of my now-husband, at least 90 seconds and two subject changes after asking the question, Yes, yes I would.

And so there is a small piece of me that would consider going to the RE if nothing else to find out if there's even a chance. Of course the RE is always going to tell a patient there's a chance given the right protocol, but I feel I somewhat need to know the answers to my personal parameters so I can sleep at night, and lie next to my husband in good conscience knowing it was a matter of science and not my emotional failings: I was too old. There was no way we could have another safely.

But I can't pick up the phone. I find other things to do, other appointments to make first, weight that needs lost, things I need to take care of before embarking on the multi-appointment hell that marks the six-week work-up to figure out the condition of my reproductive system. I can't pick up the phone because this is where I could've saved Maddy. Right here. Pushing those buttons and making that initial three-day blood draw appointment followed immediately by calling the pharmacy. A cell phone call from an oppressively hot car on an Arizona street, the day after a wedding, on the way to get tampons and lunch. That's where I failed her, as I sat unknowingly holding her fate from the passenger seat in the rental car right around noon on that Monday. And I don't want to put another child through that ever again.

Maybe Maddy was the question. Maybe that was me asking if --What If -- I could have another child, and taking that chance, and I need to acknowledge that the answer was a resounding No.