Would you rather know?

The thought came up in my bereavement group. Someone said they just wished they were told that babies died- that these awful things can happen- hearts stop beating in utero, water breaks too early, placentas abrupt, birth defects are incompatible with life, babies are deprived of oxygen in labor. Being someone who knew that babies die for all sorts of terrible, but not common reasons, I can’t identify with that wish. In some ways I wish I didn’t know. Of course, I sought information and am thankful I knew what I knew so I could prepare. But in general, I’m not sure all pregnant women want to know. And as a provider I’m not sure I want them to know. There are some things, yes, I think it’s important they know- ones that they have control over or can test for, but the unpredictable? I don’t think I want all my patients living in unnecessary fear. I’m sad I missed out on the blissful ignorance of a first (or second, or third…) pregnancy. I thought it was bad enough having extra information as a midwife, but then being given the actual knowledge that my baby might die, I never really enjoyed being pregnant in the way I wish I could. I’m not sure I ever will.

I had a patient- an educated one, a nurse in fact, in front of me for her first OB appointment. I was doing my usual spiel when we got to genetic testing. I don’t have endless time, so I try to summarize and simplify the issues as best I can. She had no risk factors, so I talked of a test that can detect the risk of having a baby with Down Syndrome and trisomy 18 and 13. I usually qualify the statement, explaining most people are familiar with DS, but the other trisomies can be more severe and those babies don’t often survive the pregnancy and rarely live into childhood. I talk much more in detail about them if people ask (surprisingly few do), but it is important for me to let people know what they have the chance to test for. If a woman declines testing, I have to ask “If you knew you were going to have a baby with DS or a trisomy, and you knew that baby wouldn’t live, would you terminate the pregnancy?” I am pro-choice (pro-information!) and just need people to be comfortable with their choices. And sadly, medically legally, this question is important. There have been wrongful life cases in Connecticut (talk about sad, people suing their providers because they wish their living child had been terminated). I need to document their wishes. I don’t even cringe when people say yes, they would terminate a baby with DS. But I have a problem when people declines testing because they think it won’t happen to them.

The patient sitting in front of me said she didn’t want testing and when I asked my standard question, “If you knew you were going to have a baby with DS or a trisomy, and you knew that baby wouldn’t live, would you terminate the pregnancy?”

She responded, confident that her age of 33 put her at no risk, “Well, that’s really only a concern when you’re 35, right? And I have no family history.”

After a few more failed attempts of trying to get her to understand that it can still happen despite no risk factors I finally said, “Well, I had no risk factors- I was 33 and had no family history and I still had a baby with a trisomy. So it can happen to anyone. What I need to know is would a trisomy diagnosis change your management?”

I hated bringing Mabel into the conversation, but she just wasn’t getting it. I felt she needed to know.

I had another patient with a subchorionic hemorrhage that kept getting bigger and bigger each week in early pregnancy. She had two late first trimester miscarriages and had been about to pursue IVF when she found herself spontaneously pregnant. As the hemorrhage grew, we providers all held our breath, thinking this pregnancy might go the way of the others. If she remained pregnant, it was so big she was at risk for placenta abruption in the second and third trimester. She was educated too- another health care professional and said to me as I expressed some of my concerns “We are just taking it day by day.” She is still pregnant, in the second trimester. I have mentioned placental abruption, so she knows. But I haven’t gone into detail, saying I’ve known people who had such a case and preterm babies who died. She didn’t need to know. Or perhaps she did know, she just didn’t need to hear it harped upon by me.

So how much do we tell pregnant women? We can’t induce everyone at 39 weeks because some babies’ hearts stop at 40 weeks. We can’t do c-sections on everyone because babies’ hearts can stop in labor. There are risks to those as well. I don’t even tell women to do kick counts daily- it only increases worry. Do kick counts when they are worried, I tell them. Women know their babies best- if baby isn’t moving like normal, then take the time. This is the struggle I have as a midwife- I know the bad that can happen. But I also know most of it is unpredictable. So I take this burden on myself; I worry for my patients, so they can have the blissfully ignorant joyful pregnancy that they deserve. Worrying about unpredictable things can only increase stress and cortisol levels, which isn’t good for moms or babies either.

(disclaimer: I don’t mean to minimize anyone’s anxieties around loss, especially once you’ve experienced it. once you’ve known loss, worry away! You’ve earned the right to worry, even if it’s about unpredictable things. Your innocence was lost like mine.)

What do you think? Do you wish you knew babies died? How would it have changed things? Do you feel the need to lecture pregnant women on the awful that can happen?

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29 thoughts on “Would you rather know?

  1. It’s a difficult one. I’ve worked in healthcare for many years, I knew bad things can happen in pregnancy, I knew babies died. I just hoped it was something that happened to ‘other people’. I wished I’d known more about preeclampsia and HELLP syndrome though. I’d heard of preeclampsia, but thought it was an issue only in later pregnancy, so when I started to show symptoms at 23 weeks I dismissed it. I am so grateful I had a routine midwife appointment at 24 weeks, because I am unlikely to be here. I am heartbroken at losing Hugo, but I know I am lucky to be alive – I know of women who have died from HELLP syndrome. It’s terrifying.

    It’s a fine balance between giving women information and scaring them. Now I’m a baby loss mama and my innocence has also been lost, I want women to know everything about everything – but it’s not possible. I really don’t know what the answer is. Women do need choice though, information provided in many ways so they can read what makes sense to them when they are ready, and if they want to. x

    • Yes, its a balance. Its important to know danger signs of things that are life threatening and treatable, like HELLP and preeclampsia. Its the inpreventable, intreatable tragedies that cone without warning that i struggle with. Like cord accidents- kick counts wont prevent, nothing will sadly. But there are also things women do that increase their risks, like not doing their diabetes testing! I make sure they know the risks then!

  2. Interesting question. I think we all know in one sense, even if not medically qualified, that bad things can happen – there are sections about certain things in pregnancy books, after all – but it’s in a vague “that only happens to other people” way. Personally I think until it happens to you there is no way to comprehend what it actually means anyway, no matter what someone says to you.

    • Very interesting point. Agreed, o do think most people feel that way- the invincibility factor “oh it happens, but not to me “. Until it does. Then its truly comprehensible.

  3. It seems to be a patient-by-patient case.

    During my first labor, I looked at the charge nurse and told her, “All I want is a live baby, but you can’t guarantee me of that.” I went on to share babyloss experiences of friends and family that I had witnessed.

    The charge nurse responded, “You’re right. We do the best we can, it’s our goal for everyone to have a live baby, but things happen. There are no guarantees.”

    With each of my pregnancies, I held my breath until I held my child. It’s just the first step.

    Do I wish that I didn’t have the witness experiences? No. I wish I had let go, enjoyed more of the pregnancy, and just lived.

    • Good for that nurse. Brave of her to be honest. I have so many women say “its safe to tell people now that im 12 weeks, right?” And my response is “we all breathe a sigh of relief once you get past the 12 week mark. But,of course, i cant predict the future. Chances are its fine.” I reassure, but make no promises.

      I wish i let go a little too.

  4. I am thankful that I had a peaceful, happy pregnancy and good memories of that time, even though I absolutely wish I’d had the opportunity to make better decisions for Sacha – and myself – and to take better care of him. I don’t think anyone knew that my specific case was even remotely possible – they/we kept looking back at my normal fetal survey, looking at my healthy tracing, saying everything was fine, and even after Sacha was born we didn’t really know what was wrong – and certainly had no idea he was going to die. So… You really can’t know everything, and I already knew that fact, which I’m grateful for. I didn’t get trisomy screening because I knew my baby was at higher risk for cerebral palsy than a trisomy, so I saw a normal screen as a false assurance of a healthy baby.

    That said, I’m glad that I knew so much about the possibility of bad outcomes, because I think that helped me blame myself much less than I otherwise would have, and feel much kess guilty. Knowing the science behind a lot of potential problems kept me from feeling like it was personal… I never felt like I was being punished, or anything like that. So knowing that bad things happen, and that they *just happen* because of our mindless little cells, with no true rhyme or reason… I’m very glad I knew that.

    • Two things you wrote really struck me vthe first- a normal trisomy test being falsely reassuring . yes! It drives me crazy when people refer to the test as the one to make sure the baby is fine. Hah! There are so many intestable things, many of which are more common (like cp). And second, the idea that knowledge helps with guilt. I definitely agree. Though i still sometimes wonder if i did something (was it the immodium i took in the first tri? The choline supplements that i started to help with brsin development?) i know deep down that Mabels issues started when sperm met egg. And knowledge reslly helped me make the best decisions i could for my body and my baby.

      • I still wonder, too — I had to push some dye just before a patient’s CT scan when I was 4 months pregnant, and I ran out of the room just before the scan started. Could that radiation have done it? I flew between SF and Chicago twice, once at 3 months and once at 7 months. And I went through the scanners instead of getting patted down. Could that have done it? I know many other women who have had far, far greater exposures during their pregnancies with no subsequent issues whatsoever. But I still wonder.

        I have so, so many patients who feel like, not just like they’re to blame when something bad happens, but like they’re actually being punished. Like, “I must have done something so horrific to deserve this, and maybe it was xyz”. And those are the people who really and truly struggle to recover from things, in the most major ways. Who can’t find meaning in life, who end up with intractable chronic pain issues, who sabotage their relationships because they don’t think they deserve to be loved, who commit crimes because they think they need to be punished, etc etc…

      • right? Isnt it crazy, how we have so much knowledge, but still succumb to thoughts of “did this cause it?”

        The patients who struggle with being punished- in pregnancy I often felt that way. I kept saying, both outloud and to myself, “but I’m a good person. what did I do?” I still have my moments but certainly have accepted the stupid statistics that are the only reason my baby died. it’s hard looking for a reason when there is none, especially without religion.

  5. My first pregnancy, which ended in loss, was very short. But because I was ignorant of the risks, it was also blissfully happy. I wouldn’t trade those sweet, excited days for anything. I’m glad I didn’t know then what I know now. And now that I know, subsequent pregnancies have been full of anxiety, while all but one still ended in loss. The worrying didn’t change the outcome, but it did change my experience. I wish I didn’t have to know.

  6. I would rather know about the things I can act on, for sure. Working in the NICU, I knew before becoming pregnant the range of possible (although rare) outcomes for various birth defects and disorders. I also knew that sometimes things happen even when you are at very low risk, which is why I chose the initial screening for T13, T18, and T21. One of the unfortunate byproducts of being active in babyloss communities is that now I know about things I can’t act on or prevent at all–late or full-term stillbirth, unexplained neonatal death, low fluid and lung hypoplasia with no discernible cause. I would prefer not to know about those, but I also recognize that as a member of a very specific grief community, part of my responsibility to others is to help carry their burdens because they help carry mine. In that way, I’m glad to be aware.

    Like you, I would consider myself pro-information. I have had a few friends who opted out of first-trimester screenings because they state they wouldn’t terminate a pregnancy for T21, and they don’t understand that those screenings can also indicate other trisomies. They are blissfully unaware that a baby’s diagnosis can be considered incompatible with life. I’m happy for their innocence, but I do wish that some providers would do a better job of communicating the purpose and value of first-trimester screenings. It’s one thing if patients decline with full understanding, but I think everyone is entitled to information about what opting out means. It sounds like you do a wonderful job! I imagine it was painful to have to bring Mabel into that conversation, so I hope your patient was able to fully understand that low-risk doesn’t mean no-risk.

    • Yes, this babyloss community has opened my eyes to tragedies i didnt even think about! People say, you’ve had your struggle- youll be fine the next time. I stop tgem and say there are no garuntees. I kniw people who have lost two babies, had miscarriage after loss, infertility, recurrent pregnancy loss. Just because my first baby died, sadly doesnt give ne a free pass. I chose the screenjng too because i knew babies die and i wanted the ingo because it might have changed my management. I also knew that DS wouldnt change things for me, but knowing would allow me to prepare (extra ultrasounds to look for birth defects that may need immediate care after birth and learning about the special needs community). In my case it helped me prepare fir the ultimate scenario- have six relatively peaceful hours knowing mu baby might die rather than a frantic six hours trying to process all the info had i not know ahead.

      All i want is for people to realky understand thrir choices. Decline if you want, just know what youre declining.

  7. A former boss of mine loved to say “Information is power”. And to some extent, it is true that knowing more can help in decision making and to optimize outcomes (in all facets of life). But, when it comes to pregnancy and childbirth, so much is completely out of our control. I remember people trying to assure me that Zachary would be fine (during my pregnancy with him), because you know “well, you’re on the Lovenox, right? C.T. made it just fine”. I remember thinking how naïve they were to think that the blood clotting disorder which triggered B.W.’s death was the only way that my child could die. And then, Zachary did die….., even after he was born and deemed healthy.

    What really upsets me personally is when people who know me (and of course, know of my dead boys) still seem totally certain of their own perfectly happy outcome of childbirth. It makes me feel like my boys are totally invisible – forgotten, even. For those people, I’d like to create a documentary-style video that explains just who and how “this” happens. No one is immune. Precious lives, precious sons and daughters, are lost everyday.

    • Yes! I feel the sane way. When people who are close to me and pregnant and they dont have the tiniest bit of worry, it makes me feel like they think i must have done something to cause my loss. Makes mabel invisible! I totally feel the same way!

  8. It’s so funny. Not one person ever mentioned anything about possible losing Gavin. Being a health care professional I am more educated than most. I know the horrible things that can happen. I am glad you use your tough experiences to help educate your patients.You never think it will happen to you and statistically it shouldn’t have happened to us. Gavin’s cord prolapsed when my water broke at 39 weeks. That apparently “never” happens with full term babies. It’s hard to say wether being more educated would have helped in our situation. Unfortunately probably not.

    • Yes. You are sadly the example of the scariest thing for me as a midwife- the unpreventable, sudden event that causes loss. Knowing ahead that it could hapoen doesnt change things. I know it can (even rarely) happen and i feel so powerless because i cant predict and cant prevent. So i keep that worry to myself. Maybe its not fair to my patients keeping that info, but i feel like i should. Im so so sorry you lost Gavin.

  9. Such a complex question (and it seems no one has a clear cut answer to it). There are things I wish I had known but I also make the conscious choice not to try to know everything.

    I am among those who chose to decline trisomy screening during my pregnancy with Paul even though I was scared about trisomy 18 (and to a lesser extent, about raising a child with Down syndrome). I can’t quite explain why but I felt knowing would not be empowering. I know now more than I did then about how babies can die at all stages of pregnancy and early childhood and still, I have made the same choice this time. I choose to keep myself in some ignorance because that’s one thing I can do to preserve a somewhat hopeful mental state. So as much as I cherish having access to information, I am not quite sure pregnant women need more information than they have in a regular modern pregnancy care.

    • Thats how i counsel people too. When deciding, i guide them. First i say they have to decide whether a trisomy would change their management. Then if it wont, the next think i say is, would the info help you prepare or would it cause extra anxiety. For many its the latter and i totally respect that. Sometimes there can be too much info.

  10. I think information is good but only in situations where it can change the outcome. I “knew” babies could die but I always thought it was in very rare cases and for reason. Well, here I am, 1 day post my second D&C in 5 months, both for “missed miscarriages” that occured after perfect 12 weeks scans, with strong heartbeats and clear genetic testing results. And as my doc says, “it can just happen.” So now I know that nothing guarantees a healthy baby, a live baby. I long for the days when I thought a heartbeat on a 12 week scan meant easy sailing for the remainder of the 9 months. If we decide to try this again it will be 40 weeks of the worst anxiety and worry. And for what? Another ultrasound at 16 or 14 weeks with no heartbeat? How do I sign up for that again?

    • yes- when something can be done about it, information can be very empowering- but when we are helpless it can be frightening too. I cant even tell you how many times a day I get asked around twelve weeks- “so its safe now, right?” ooph. what I want to say is, “no, never.” but end up saying “well, we cant predict the future, but your risk of miscarriage goes way down at this point.”

  11. When I lost my first pregnancy, I was shocked. I knew women miscarried, but I didn’t really understand that it could happen to me. That experience removed the joy of pregnancy for us. We never rested easy in pregnancy again, always filled with the horror that the baby could just die. Then our third baby was born sick. No one knew what was going on. Finally, our GP and some specialists suspected a really awful disease. The doc kept trying to describe to me what they were testing for and why and I just kept changing the subject. Finally, he figured out I couldn’t do it. I couldn’t hear those horrible words. So he just told me if she had it, she would die before age two, and I nodded without looking at him and walked away. I’m a working professional in an academic field and normally fiercely informed about my kids, but on that one I just didn’t want to know, and I was grateful that he respected that.

    • That seems important too- a provider that can recognize when how much to tell. it is horrible to give bad news and until a diagnosis is certain, how much do you tell? I’m glad that if you had to go through such a trauma, you had a provider who seemed to understand you.

  12. Thanks for this discussion. I think it would be great to create a session on this topic for practitioners. I feel like this probably doesn’t get discussed enough.

    I feel like I was always aware that babies could die, but I do wish that my practitioner had said something direct. My daughter was measuring small and there were other signs of trouble. We were referred to a high risk OB practice for more tests. I wish that someone had taken my hand and said something to the effect of, “with signs like these, it is very unlikely that your baby will survive”. I did enough research on my own to know it was very serious and she might die. I wish the people who cared for me (and her) were brave enough to be honest with us. They could have couched it with a, “nothing’s certain, ” even, but looking back I see their failure to do this as more cowardice and avoidance than hope our baby might actually survive.

    • oh yes! I got both worlds- the OB world was very direct and basically said my Mabel would likely die. But the pediatric world could only say “we’ll see when she gets here!” I dont think it was hope for them- it was just unknown and they didnt like the idea of being too realistic. I decided it sucks either way. I was glad in some ways to know Mabel might die, so I could have a calmer few hours with her and some plans in place like funeral outfits and homes. But I feel I missed out on so many lovely pregnancy things knowing what I knew

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