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?
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It was hard to go through another pregnancy in that state of worried waiting. But ultimately I don't think that questioning tests is a bad thing. It makes having conversations about care and treatment options more realistic.
Before I became pregnant again, I assumed that I would want extra tests and monitoring. I considered even purchasing a doppler machine for my home. But, I've found the opposite to be true. I put off calling my doctor, and I have to drag myself to every appointment. I don't want to hear bad news, and I don't want to receive false hope. I just can't really imagine it all going well- this little boy being healthy and strong and alive. I think I've lost trust in medical technology, as well as my instincts and so many other things.
Following that was the cervical ectopic, and a visit to an OB, which confirmed every awful stereotype about OBs I'd ever heard. It was a thoroughly terrible experience, and I was treated very poorly. So I was anxious, but I stuck with my midwife when I fell pregnant with Gabriel. I was pretty high maintenance and high technology when compared to her typical patient - I had early bloodwork done, an early u/s for placement and viability, and opted for an NT scan (she had to look up the instructions on how to fill out the blood requisition and personally call the u/s place). All of the bleeding and complications eventually sent me to her backup obstetrician.
He saw me, diagnosed me with placenta previa, asserted it was the cause of all the bleeding and clots and stopped his search, despite my other symptoms. He told me he couldn't make any guarantees, of course, but said I would have a perfectly healthy full term pregnancy once the previa cleared up. He was kind, friendly, treated me well and I pushed any reservations I felt deep down (if I felt any. Hard to be sure with hindsight).
Turns out, he was pretty well wrong. I'd likely had an abruption that was trying to heal, though we can't say for sure and it probably wouldn't have shown up on the ultrasounds. But he did dismiss my concerns the final time I saw him and I was feeling uneasy - I have emails stating that.
The hospital most definitely bears some blame, but not because technology failed - because they didn't do anything. They didn't take me seriously, they didn't check me, they didn't do anything to try and stop labor until it was far too late to try. It may have been fated to the same outcome, but they certainly didn't follow procedure and so I'll always be left with a lot of questions about what might have been had they followed standard procedure and had checked me within 20 minutes of my arrival, instead of leaving me alone for over an hour.
That most definitely shook my faith in the medical establishment. I had always believed that if something went wrong in my non-standard care, the hospital would save us. I figured we could rely on them to do everything in their power to help us out of whatever situation arose. Instead, they ignored me, talked down to me, left me alone, neglected me and my son was born far too early to survive.
So you can imagine that going to a hospital now leaves me a little shaky. But I am now a high risk patient and so I found a new practice of doctors who deliver at the best hospital in town. I've just gone through all the blood testing for clotting disorders (which we think is the likely culprit) and have plans for an shg. The new doctor is fantastic with me and I like her very much. She has told me that I will be very, very closely monitored for my next pregnancy - ultrasounds every two weeks if all is well, oftener if it's not. I will see her more frequently (every two weeks, or more) and consult at least once with an MFM, and again, oftener if necessary.
I know that that gives us absolutely no guarantees. It won't necessarily catch another abruption or fix it if one occurs. I know that it's more about the illusion of control than actually having control (though the blood tests are good, because that at least is treatable with baby aspiring and/or lovenox if necessary), but I appreciate that they are doing everything they can to try and monitor and help us. I'm not in love with the idea of the very medicalized pregnancy and childbirth, but at the same time . . . if the doctor said 'Let's talk about scheduled induction or scheduled c-section.' then I would seriously consider it, which is about as opposite of how I started as you can get. Because ultimately, the most important thing is a living child. And I'm willing to do a whole lot to get there. I know there is no guarantee, I know there is no promise, but we'll still be utilizing al the technology we can to help us out.
And really the exact diagnosis does not matter since he wouldn't have lived anyway since his lungs never would have developed without the amniotic fluid. His chromosomes were examined though and were found to be normal, so the cause behind the organ agenesis was not genetic.
If I'm lucky enough to become pregnant again I will have more tests done, specifically extra ultrasounds performed after 12 weeks to see if the baby starts to make it's own amniotic fluid.
I think that medical technology should be used moderately when it's invasive and I understand why some people do not like to have tests done, but technology can give important information about what is happening whether one wants to know about it or not (if that makes sense!) To clarify, I mean that not knowing that your baby will die or will have serious birth defects won't prevent it from happening. I would rather know about the inevitable.
We are still trying to get pregnant again, over a year later. We've talked about going a whole other route- finding a new doctor and/or midwife and definitely having the c-section. It's hard to plan the next time when your not even pregnant, but I can't help but think about it.
Not sure about the testing and ultrasounds and how that will all go. I guess we'll just have to wait and see who we end up with and how we feel about it when the time comes.
And then there came Ireland. I had an u/s to find out how far along I was, 9 weeks at the time. 5 weeks later I went into labour and had no idea why-until she was born and she was perfect...from the neck down, and that's all there was to her. I was in such shock and it took me weeks to even ask my husband if I had seen her right. I didn't get to touch her little head, she didn't have one. So for me, seeing this little baby that I am carrying right now on u/s is the most important thing to me. I still know something could happen, something that can't be seen. Hell, babies die of SIDS every day and we still don't know why.
I think everyone needs to make a personal choice about their health care and how they handle it, and do what makes you feel best. Find a doctor that is willing to help you to the extent that you need it.
About an hour before he was born (via emergency c-section), I had an ultrasound to try to figure out why he'd stopped moving. He had a heart beat, but the technician didn't know why he wasn't moving. It wasn't until his heart rate slowed and he was born that they saw what was wrong with him. Up until that point in my pregnancy, none of my scans or checkups showed anything wrong.
In any future pregnancies, I want the works. Anything they've got to see what might be going on in there.
I had a healthy pregnancy and a perfect homebirth, and six hours later my beautiful girl was dead.
We still don't know why. Seventeen weeks later and the post mortem results are still not back, and all we have are the doctors best guesses that she either had an infection or a heart defect.
I do hope to get pregnant again soon, and honestly I just don't know what I will do differently if we are lucky enough to get pregnant again.
I know no one is keen for me to have another homebirth,despite Florence's place of birth having no relation to her death.Iinfact there is an argument that her homebirth and more specifically the physiological third stage was what meant we had any time with her.
I just don't know what I think anymore.
Which has made it easier for me to embrace the polar opposite for this current pregnancy. I'm 29 weeks now. I see a midwife every four weeks, I see an OB every four weeks, I have a scan every four week. I am having an elective section at 38+ weeks. I'm not physically high risk for pregnancy (just labour, which I bypass this time) but my consultant and I agreed that psychologically I should be treated as "high risk". It does help but it doesn't stop me prodding my belly every night and pleading with little one not to die. I've never had a bad ultrasound but, even as I hear the words each time, "baby looks fine", I add in my head, "so far as you can tell." I let it placate me for a little while after each scan - I need the breathing space - but the reassurance never lasts long. Oh, and even though my baby was stillborn, I still intend to buy a breathing monitor for the crib because, even if I bring this one home, I have lost the ability to NOT look for some technological reassurance.
i put myself on bedrest and my OB called me a couple days later. i asked her if it was possible that the cervical ultrasound reading was wrong. she said no. she also said it would be better to lose the baby now than in a couple months (!!!). but she set up an MFM appointment for me.
the MFM did another ultrasound around 16 weeks - baby looked fine, my cervix measured 3.5. he said sometimes ultrasound measurements are wrong, that the radiologist probaby did it wrong. he measured me again 2 weeks later - cervix looked great, bleeding had stopped, baby looked great. no need for bedrest, go about your business.
a week and a half later i went into labor and when we got to the hospital it was already too late - i had my baby girl at exactly 19w, 6d. she was perfect. but no one knows why it happened. were the cervical ultrasounds right or wrong? was it preterm labor? or was it incompetent cervix? was it technically a miscarriage that started way back at 14 weeks? was it an abruption? i've talked to my OB and two more MFMs since then. basically, nobody knows anything.
if i get pregnant again ii will have cervical checks every 2 weeks. will i trust what they see on the monitor? probably not. will i trust what any doctor tells me? probably not. i'd like to. but i won't.
bonus: i had an MRI to determine if my uterus is septate or bicornuate. results = inconclusive. i got a renal ultrasound to find out if both kidneys are there; they are, but whoops, they snuck a peek at my gallbladder and saw some polyps on there so now i have to have an appt with a specialist to discuss taking my gallbladder out. seriously? nobody knows anything.
I realize this wasn't the point of the post, but this sentence stopped my breath. Not that there's anything wrong with it, but this is something that I can't imagine doing under any circumstances. I hope to never see another ultrasound photo as long as I live.
Just because the chromosomes were fine (correct amount, no translocations) does NOT automatically mean that the cause was NOT genetic.
Chromosomes contain genes and other stuff that regulates if/when genes are turned on/off. You obviously want all of them to be there, and don't want any missing (or even parts of them missing). I like to think of the layout you get after CVS/amnio as a map of the continents -- they're big things, and it's bad news if you have three Africas or are missing part of Asia.
But contained in every chromosome are genes, according to the GITW resident scientist Julia there are roughly 23,000. I like to think of these as cities and even villages on the continents, and they are NOT part a typical chromosomal workup (like CVS/amnio) unless you're specifically looking for something. That is, for example, if you know both parents carry the gene for Cystic Fibrosis, you can do amnio, and when you're done counting chromosomes to make sure they're all there, you can zoom in and check for the mutation to determine whether the child will have it or not. They now know which gene holds this particular problem, and where (on which chromosome) it's located. The genome project is currently working to map all these thousands of genes and determine what they all do, and what happens when they're mutated, and while they've made tons of progress, there's still a lot of mystery out there.
In short, the continents can be lined up correctly, but if a village is out of sync it can cause a helluvalota damage depending on what its particular responsibility is.
Ergo, my daughter Maddy was chromosomally normal (correct number of chromosomes, no translocations), but still could have had a genetic disorder -- sadly, not a recognizable one nor one that has been linked to a specific gene though they've tested her for many. Thus, because they don't know if it was genetic or not, my odds of a future child having this problem are as high as 1:4 (both parents would need to pass along a recessive gene to cause the problem), and there's no way to test for this since they don't know what to test for.
Hope this makes sense. I'd just hate for a doctor in the future to throw out a genetic possibility at you and have you recoil in surprise thinking you'd been cleared of those.
This post started me thinking of the myth of Baldur's mother, who, out of love and worry, ran around the world asking every creature and plant and thing to promise not to harm her son. But of course she missed something, and of course it killed him. Medical tests feel like that to me now. Having said that, every problem that's ruled out with this pregnancy makes me feel a bit better, even though it's a bit like taking five drops out of the ocean of things that can go wrong and saying "these five won't hurt us." Having been on the wrong side of statistics once, I'm maybe more willing to risk "needless anxiety" on the off chance that we catch something we can actually *do* something about.
I think I've had upwards of 100 ultrasounds now. I had them when my uterus didelphys (two uteri) was first diagnosed. I had them through three cycles of IUI and IVF. When the dr told me that she was very sorry, but that she couldn't see the baby's heartbeat on the screen, I genuinely thought for a minute or so that she was giving me bad news - but not final news. Idiot, in-denial I!
I had them for miscarriages 2 and 3. I had them fortnightly throughout my pregnancy with my son Harry, including one in the morning when, in hindsight, I was already feeling the first vague tummy cramps of early labour. I watched them ultrasound Harry's head in NICU when they were looking for haemorrhage, before moving to his heart and finding his hole. I had one yesterday looking for gallstones; it didn't find any but it did reveal a back-to-front heart.
And then there's my fetal doppler. My midwife did everything short of pat me on the head and tell me that I shouldn't mess with things I didn't understand when I told her that Harry's heart was slowing down and skipping beats. I used to switch it on to listen every day, sometimes several times, my heart thumping in my ears as I frantically searched my belly, listening for the hoofbeats. After weeks of this, and his growth dropping away from the scale, he eventually he obliged me by doing the whole heart-stoppy thing on CTG trace, which got everyone's attention rather abruptly. He is now due for an MRI of his brain. I suspect I'm also due one of pretty much my entire body, given that I seem to be oddly constructed.
In short, I've had more contact with technology than most. And, like yourself, and many of the commenters above, I believe it's... helpful. It tells part of the body-story, but you never know how long that particular book is and whether there are chapters of print that are simply too fine to see.
A girl I knew had a great NT scan, only to find out a few weeks later her baby had a serious spinal/brain malformation. People kept saying, but how, didn't you just have an ultrasound? I just sighed. If they don't look for it..... and even then....
They reassure my baby is still alive. But there is so very much no one can see until they come out.
When I reached the labor and delivery floor and the nurses checked me, I was already 9 cm dilated. "Good job mom" the nurse said. I screamed.
Within minutes I was being switched into the delivery room and prepped for my epidural. A nurse kept trying to push on my stomach and slide a band around me but I whaled in pain. Once my epi kicked in, I finally relaxed enough for them to put the monitor on my stomach. They fussed with it and kept moving it all around. They finally found him and soon there after it was time to push.
I pushed for four hours. When I had made enough progress the doctor gave me a snip and a dozen more pushes my baby boy was born, dead. Twelve minutes later a nurse came in to tell me the news. The day my life stood still.
The doctor would later tell me the heartbeat they were monitoring was MY heartbeat, not the baby's. In fact, he guessed the baby had been dead twenty-four hours before I came in due to skin peeling and bruising.
I don't know if I could have given birth to my son knowing he was already dead. In a sick, sick way I'm glad the hospital messed up, but I just don't know how else to feel.
Tikva was the one the ultrasound doctor told us had her lower organs incorrectly located in her chest cavity. I will never in my life forget the sound of that doctor as he stared at the ultrasound screen, paddle on my jellied belly, and told us, "There's a problem." We were so naive, so hopeful. We even took Dahlia to the ultrasound with us, never in a million years imagining that we would have anything but the exciting experience of seeing our baby floating around happily on the screen. I think in a future pregnancy Dahlia won't be coming with us.
Once they learned about Tikva's CDH, my whole prenatal care changed as I became high risk. I lost count of how many ultrasounds I had, but I'm pretty sure it was somewhere close to 20, if not more. I had a previously unplanned amnio to rule out other chromosomal abnormalities that sometimes can be the cause of CDH, but fortunately weren't for us. They used ultrasound to measure the size of her head as it compared to the size of her lungs at a certain fetal age, which gave us a fancy number that rated the degree of her CDH and what that might mean about her future. With that number came a 30% chance of survival. I realized in that moment how little comfort numbers can be, how vague and unsure they can feel.
And then when Tikva was born, she had an x-ray of her chest every single day of her entire 8 weeks and 2 days of life. That's a helluvalota radiation, but that and the fact that she took more drugs in her life than most of us ever take in 80 years seemed like small potatoes compared to the huge issues she was dealing with. I'm not a fan of unnecessary exposure to radiation and medication - and I am the daughter of a mother who wouldn't let the dentist give me annual x-rays of my teeth - but if it could give the doctors some sense of how my daughter was doing and how to help her, then rock the x-rays and drugs, doc!
Now I'm not sure. Earlier on in this journey of loss, I was very sure that I would do everything possible in terms of prenatal testing in a subsequent pregnancy, and as early as possible. Triple screening, CVS, ultrasounds at every appointment, whatever they offered, I'd take it. And note that with my first pregnancy with Dahlia, working with midwives, I had one ultrasound and no testing. Concerned about potential harm to my baby, and trusting that she was fine because I felt that she was fine, and with a strong sense that even if she wasn't, we still wouldn't terminate. I know so much more now...
So now I'm not sure. I am so aware that no matter how much testing you do, there is just so much that you can't know, can't be prepared for. Millions of things can go wrong at any time. None of us are out of the woods, simply because we're alive and life is terminal in one way or another.
But something feels different now. I just feel calmer about it all. I'm not anxious to know in advance of being pregnant again what I will do when it comes to all the testing. I think I will just need to confront each one in their own time, and like I've done with everything else, trust my gut and make the best decision possible in that moment. But I no longer feel the need to have every test possible. I've been told that it's unlikely I will have another baby with CDH, but who knows. After being part of this community for over a year, and having been in the NICU with Tikva for 2 months seeing a lot of other babies struggling with a lot of other conditions, I now know of the thousands of other things that can happen to a baby. I can spend my time chasing them all down, giving me some false sense (at least that's what it feels like to me, I'm not making judgments about anyone's choices) that if I just stay on top of ALL the possibilities, I will be able to prevent all bad things from happening. Or I can be in my own experience and just make the best choices possible in the moment. And then throw some caution to the wind and remember that in the end I am just not in charge. It's all a risk, no matter what tests are available.
When I would stand with the doctors in the NICU as they looked at yesterday's and today's x-rays of Tikva's lungs to see what might be causing that day's challenges, I was struck by a very strong awareness that doctors know very little, and can provide few guarantees. I was struck by just how HUMAN they are. These tools might give them some answers, but they don't give them all the answers, and they don't guarantee a healthy life for all people. In the same way that I rifle through my arsenal of homeopathic remedies trying to find the one that will make Dahlia feel better when she has a stomach ache or a cold, the doctors are doing the same thing when they try different procedures or medications based on assumptions they're making looking at x-rays or MRIs or calculations from blood draws.
It takes a lot of surrender to accept I am not in control of any of this. I now appreciate, rather than get frustrated at, a doctor who is vague and unsure instead of speaking in definitive terms...
One more thing on the mammogram piece: My OB-GYN recently gave me info about a breast pap test that is brand new and tests for abnormal cell activity in your breast fluid that might be the cause of pre-cancer activity. You stick your boobs in a kind of breast pump and it squeezes out fluid that is then sent to a lab to be tested, like a cervical pap smear. They recommend doing it annually starting well before age 40, and it's less painful and quicker and about $85 (not yet covered by insurance). Interesting... though I'm sure also no guarantee. (http://www.neomatrix.com/halopap/index.aspx?gclid=CKHwy6Col54CFRHyDAod3GVBnw)
It just really resonated with me, I guess. It's something I noted before I lost Gabriel, that I was more aware of what could go wrong and because I spent a lot of time on Success after Loss boards, I saw a whole variety of problems that I hadn't realized were out there before that and it made me a lot more scared. Now I'm trying to let those go because I know we cannot possibly know everything or prevent much of anything and all the monitoring in the world is just an illusion of control. The potential benefits are worth it to me, in that I want to know in my heart that I did everything I could do to identify and treat any problems, but I know in the end, it may not change the outcome.
His condition is not heritable, and is not known to repeat. So when I became pregnant with his younger sister, I struggled again with whether or not to make the same decision. Knowing the exact cause of my son's death, as well as a prevalence rate of 1/15,000, spared us the tremendous anxiety that other babylost parents feel--the worry of a repeat death. That never once (well, maybe once, or twice) entered into our minds. I recognize how lucky we are to be spared that particular trial.
In the end we did get the ultrasound, more to make our MDs happy, picking our battles as it were (we are not the easiest patients to deal with). And even though the scan did nothing to set my mind at ease about the health of his sister (I already knew she would be fine), knowing she was a girl actually was psychologically helpful for me in preparing for her arrival. We conceived very shortly after our son's death, and at that time, I needed her to be his reincarnation. I believed it, would accept nothing except the son that I was due. Finding out she was a girl was the first step to helping me see their distinction, and gave me five months before her arrival to come to better terms with his permanent death, and her individual life. Sometimes I still roll that possibility around in my mind, that she is his reincarnation, but never for long--it feels dangerous and terrifying. As she grows and as her self becomes more evident, it's been easier to distinguish them in my mind. So that is what the ultrasound bought us.
I show up for well women every couple of years, and I will probably relent to one mammo at 40, but I really don't listen to what they have to say anymore.
I know I'm not alone in wishing medical technology could do more than it can, but even without having experienced anything like what you have, I know that for now, it can't.
It is horrible to be on the receiving end of one of these situations. I had several reassuring ultrasound scans of the girls, including one the week before they were born. G's heart was examined in great details by very knowledgeable doctors. I suppose that it was an outcome that could not be predicted by viewing her heart via ultrasound.
An irrational part of me believed that, if the girls both made it to the NICU alive, they could save them. With all the wealth of technology and expertise they had available, I simply couldn't believe that they could die in the midst of it all. But sadly, one of my children did die in the NICU.
I saw how much effort went into trying to save G's life, the concentration on the faces of the doctors, the skill required to insert tubing and needles into a body weighing less than a couple of pounds, the compassion with which they treated my daughter and the gentleness with which life support was removed and her body was handled after her death. She was always spoken of as a person and that meant a great deal to me.
In a situation where I could do nothing, nothing at all, I couldn't help my children breathe or control their temperature or their blood pressure, I had to surrender utterly to medical technology and to trained professionals. I can't help but respect them.
I wouldn't do anything differently. I would still following the recommendations of my midwife and doctors. I would still go for all the standard screening tests, in the knowledge of their limitations but still with faith that they are, in general and on a population wide basis, a 'good' thing.
And hope I don't end up with the shitty 'false reassurance' end of the stick again.
Once again, a member of my family is facing horrific life and death decisions, all unforseen.
I can't tell you how much I am reeling-- it's bringing back nightmares of my firstborn son's death, and his (surviving) twin brother's fight for life.
Testing did not pick up any problems, and because Muscular Dystrophy (a possible "marker") doesn't run in the family, my sister in law wasn't tested for genetic issues... Just a firstborn child, much loved and anticipated, thought to be a bit on the small side.
With my surprise second pregnancy, I had every test imaginable to man; and while I understood that it might not have prevented every possible scenario, it allowed me to keep my sanity.
The bleeding continued. I switched to a high-risk specialist, as my son had been premature as a singleton. They told me I could fly, swim, go on vacation, that this could end with various outcomes, and what will happen, will happen.
Three weeks later, I return for another u/s. I am told one twin has no heartbeat (I SWORE I sould hear it though, but that maybe it was the other baby). I was tole this could end with various outcomes as well. Two weeks later, I was told there IS 2 heart beats (WTF!!!) BUT that baby a will die anyway because I am losing fluid. Again, I am told the varoius possible outcomes. They suggest reduction, but I no longer trust them and their technology, so I refuse. 5 weeks later, after several more ultrasounds, "we're not sure if you have placenta previa, how can you but still be leaking fluid & blood, Im not sure" and this was the head of the dept of one of the best hospitals in this country. I had a u/s then, less than an hour later, passed a clot the size of my hand. How can these things be missed?? Because, ultrasounds are NOT 100% accurate, for anything. My mom actually does them, and she said sometimes even heartbeats can be hard to find while they still exist. CRAZY!
I ended up almost dying by bleeding out, even though I had HUGE clots in my utereus, Im talking as big as the baby I delivered at 22 weeks. They didn't see them, or were'nt looking for them, I dont know.
If I am fortunate enought to get pregnant again, I will still want to be monitored closely, for the baby's sake, but don't think I caould let myself believe everything is OK, unitl I have a healthy baby home with me.