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?

Sometimes knowledge is power and sometimes knowledge is pain

I have a friend who is a doctor and she shares snippets of her daily life- the trials and tribulations of a resident physician, her patients and the lessons about life she learns. Some stories are beautiful and uplifting. Some make me cry. Some make me cringe. All are insightful.

Recently she wrote of a meeting of providers- discussing their patients’ cases and one of them, an oncologist was distracted because he had recently learned of his mother’s breast cancer. He had trouble focusing on the meeting because he knew better than anyone what the diagnosis meant for his mother and his family.

“Because sometimes knowledge is power and sometimes knowledge is pain.”

This was me, my entire pregnancy with Mabel. I had a week before my first ultrasound where I assumed everything would be okay. Until there was no heartbeat and we thought I had a blighted ovum. Seeing a heartbeat a week later, confirmed a viable pregnancy but I spent the rest of the first trimester knowing what it felt like to miscarry and worried I’d be feeling that way again. Though I told my family I was pregnant before my genetic testing, I asked them not to share the news until we got the results, because even though I had no risk factors, I knew it could still happen to me. When I learned Mabel had Down Syndrome, I decided to accept the diagnosis, but it wasn’t simply recognizing I’d be raising a child with special needs. It was also recognizing that I might not be- I was all too familiar with the risk of miscarriage and stillbirth with the diagnosis (ironically, I wasn’t thinking about neonatal loss). When we were told her kidneys weren’t working, she had no fluid and if she were even to be born alive, her lungs would likely be too small to sustain her life, I had some hope, because what mother doesn’t? But I also knew. I’ve told people myself when there is no fluid at early gestation that their baby will die. I knew.

Yes, sometimes knowledge is power. I was able to research and make my own educated and informed decisions about my body and my baby. But knowledge was also pain for me. I never enjoyed my pregnancy like I should have, like I wished I did; it was too tainted with worry.

I’m sure those of you out there who have had a pregnancy after loss also know that knowledge is pain. There are some of you who may have learned that lesson with your first pregnancy, like me.

Is knowledge power? Is knowledge pain? What is your experience?

Come home safely Chris

My husband returns home tomorrow.  It’s been two week since he sat next to me on the couch watching Orange is the New Black.  Two weeks since he fired up the grill for a fajita dinner.  Two weeks since I kissed his sleepy face goodbye as I ran off to bootcamp at some ungodly hour.  My husband had been summoned to Japan to take tours of facilities and sit in hours of meetings for work.  It was been a long two weeks.

For a year and a half of our dating life we lived apart.  When he applied to the competitive two year rotational program at work, knowing he could be placed time zones away from me for eight month periods, I said to him, “Ok.  But I want you know that I’m in this for the long haul.  If you go away, I expect that we’ll still be together when you get back.”  For sixteen months he was in Pennsylvania, commuting back to Connecticut on the weekends to see his girlfriend.  It could have been worse, I know.  It could have been Canada or Puerto Rico or Troy, Alabama, but it still wasn’t Connecticut.  After sixteen months he came back and three months later we were married.    Turns out he was in it for the long haul too.

In the scheme of things two weeks may not seem like much, but this will actually be the longest we’ve ever been apart.  It comes at a tough time too.  I’m still actively grieving, adjusting to my return to a job full of triggers and battling emotional mood swings.  Enough time has passed and I appear to be functioning, so I’m not on people’s radar as much.  The first week, I turned out to be quite busy, which was nice.  The second week, I have had less invites (not none, though), but that turned out to be a good thing.  I was a bit in the doldrums and needed time by myself, something I haven’t felt I needed in a long time.  I guess without my rock, my Chris, I don’t function as well.  The thirteen hour time difference didn’t help- his morning is my night and so we were always catching each other on our way out the door.

Right now he is on a direct flight from Tokyo to New York.  I can’t help but be worried.  In the past few months I’ve developed an acute sense of worry about my husband’s well being.  I have him email me when he gets to work every day, just so that I know he didn’t get in a car accident.  This year I’ve faced what many would call one of the worst possible things- but I know differently; it could be worse.  I could lose even more.  I could lose Chris.  Being struck by tragedy once has made me sensitive to the idea that other tragedies can happen, as unlikely as they might be.  This is a normal process of grief, I know, but normalizing it doesn’t lessen it.  A commercial plane was just shot down mistakenly and almost three hundred people lost their lives.  That news story has amplified my worry about Chris’s travel.  Sixteen hours in the air, with no way to contact me to tell me he’s fine.  I’m holding my breath until he lands.

Maybe Baby

I started a pinterest board once I was publically pregnant.  I pinned cribs I liked and resources for Down Syndrome.  I hadn’t announced on social media that my baby had Down Syndrome, but I wasn’t hiding it either.  If people followed my boards and saw that I was pinning things regarding Down Syndrome, they could make the connection.  I didn’t announce because I didn’t want pity.  I wanted it to be just another thing, like my baby’s gender or hair color.  I was ok with sympathy for the worry that the diagnosis brought, but not pity.  I named this pinterest board “Maybe Baby.”  I like the way it rhymed and it described how I maybe would buy these things for my baby.  A little part of me was also trying not to jinx the pregnancy.  With a higher risk for loss, I didn’t want to make assumptions.

When I was in the hospital in the last weeks of my pregnancy I changed the name of that board.  “Maybe Baby” sounded too realistic.  Maybe I would have a baby, maybe not.  It wasn’t how the name was intended but it felt too much like tempting fate.  I changed the name to simply “Baby Baby.”

I am still in shock about how so many of the things I worried about and cried over came true.  As a midwife I was terrified about stillbirth and loss; my pregnancy turned out to have a high risk of stillbirth and I ended up with a loss.  When someone told me they were pregnant, I cried in private saying to Chris- “they’re going to have two babies and I’m going to have none.”  I would tell people about my baby’s Down Syndrome so that I could tell them that there was a high risk of loss.  I named a board “Maybe Baby” and it turned out to be a good description of my pregnancy.

I am a very rational person but there is still a little voice that tells me- you worried too much.  This is what happens when you worry too much, your worries come true. You predicted your future with pinterest.