The screams I swallow in the patient rooms

“Answered many questions” is often a code phrase we use in charting.  Some patients simply have an abundance of questions needing answers.  It can often be in stark contrast to ones who don’t ask any.  We always answer their questions, though sometimes we might suggest saving some for a future visit if we are running out of time.  A detailed conversation about pain relief options for labor is better had in the third trimester, so when a patient asks about epidurals at their second prenatal visit, I’ll often give an abbreviated answer, so that we can focus on more appropriate topics for the stage of pregnancy that they are in.  When I see our code phrase in someone’s notes, I enter the room prepared to be more directive in our chitchat, so I don’t run late and thus respecting my other patient’s time as well.

A few minutes into our visit I wish someone had written the code phrase, so I would have been better prepared.  The hard part with her questions was that they didn’t really have an answer.  She just needed to talk about her anxieties.  I am someone who understands anxiety, so I am usually quite understanding when a patient needs to talk things out.  I think I may have lost this sense of understanding when Mabel died.

After entertaining her questions about multiple physical complaints, reassuring her that all she felt was normal, she launched into her concern about the First Trimester Screen, a basic screening test for Down Syndrome and Trisomy 18.  She was scheduled for later in the week and was nervous because she knew someone who had it and the doctors had told her they thought the baby had Down Syndrome.  The expectant mom chose a CVS and then had to wait two weeks for the results.  The baby didn’t have Down Syndrome, but those two weeks of waiting and worry were just awful!  She couldn’t imagine having to do that! She was so nervous about going for the screen because she didn’t want to have to deal with a false positive, like that.   She was so anxious, how awful.

“If you knew your baby was going to have Down Syndrome, would you terminate the pregnancy?”

“No.”

“Then don’t do the test. It’s optional.  If it’s going to cause you more stress and the results wouldn’t affect your thoughts on your pregnancy, maybe your shouldn’t do it.”

Usually I’m having the reverse conversation with patients.  When women decline the test I have to confirm with they that they truly understand what they are declining.  Many women feel that they are low risk (no family history “young”- less that 35) and so are declining because they essentially think they are invincible.  I have to confirm with them that knowing they had a baby with Down Syndrome or Trisomy 18 wouldn’t change their thoughts- they would continue the pregnancy regardless.   The last thing we want as providers is for someone who declined testing because they didn’t truly understand what they were declining, to end up with a baby with one of those trisomies and wish they has made another choice.  It’s not my job as a provider to make them feel bad about their decision- I soley want them to understand them fully and embrace them.

“But I want the ultrasound!” she said when I suggested the test seemed to be causing her too much stress.  She continued on about how anxious she was.

That was it.  I couldn’t take it anymore.  I wanted to take her by the shoulders and shake her, screaming,  “I know!  I know EXACTLY how it feels to be told your baby might have Down Syndrome and have to wait for the CVS results!  I KNOW! And you know what?  That’s not the worst.  The worst is living with the fear of miscarriage and stillbirth after you get the positive results.  The worst is to accept those results and welcome that baby only to be told months later that the baby would likely die.  The worst is to live out the rest of the pregnancy afraid to bond with the baby, unsure how to respond when people congratulate you and to cancel your baby shower because you don’t know how to celebrate the baby.  The worst is not being able to keep her inside you longer, where you know it is safe and she can breathe.  The worst is hearing the doctor say she is going to die. The worst is seeing her face vent free for the first time in her moments of death.  The worst is holding her lifeless body and then giving it to the nurse never to hold her again. THAT is something to worry about.”

But I don’t say any of those things.  I swallow those screams and let them sit there in my belly, churning in sadness, anger and annoyance.

“Well, this is one of those hard choices you make when you become a mother.” I say curtly and end the conversation.  I reach for the doptone to listen for her baby’s heart rate, signaling to her I am not going to talk anymore about it.

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5 thoughts on “The screams I swallow in the patient rooms

  1. Gosh, that sounded like a very difficult conversation. It must have taken everything you had not to shake and shout at her. We see things from a very different perspective now, and that can never be removed. Hugs.

  2. Interesting to read it from a providers point of view! In our rainbow pregnancy we turned down all testing. I just couldn’t do it on top of the stress I was already having worrying if I would get to take this little one home from the hospital this time. Hugs to you and all you have to deal with.

    • Ah yes, we know what it’s like worry in a way only babyloss moms know how, huh? It’s something I think about if I’m lucky enough to have another- I think I will test (testing allowed me the ability to prepare for my daughters life and death in a way I was grateful for) but I know anxiety will eat me away!

      • Completely understandable! I had nothing to tell me or prepare me for what happened. In the end, if there is NO WAY to change the outcome of death, if I had known, I could have enjoyed my pregnancy more. Demanded to leave my hospital room to see my daughters.

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