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?