To know or not know?

Is it better to know or not know?

 

I talked this question through with my midwife today.  I’ve also explored this thought with someone who had an unexplained stillbirth at term.  Is it better to know you might lose your baby or not know?  With her, I think we both agreed that it sucks either way.  But in my case I often wonder- what if I didn’t do testing?  My husband and I are information seekers; we think in general it helps to know.  But I have learned that much stress and anxiety comes with knowing.  So I have asked myself many times this pregnancy, what if I didn’t know all that was happening?

 

Would we have ever known about the low fluid?  Maybe, maybe not.  My first big ultrasound would have been at 18 weeks and we would have seen the clubbed feet- which wouldn’t have required any follow up ultrasound.  We would have also seen the slightly dilated ureters, which probably would have necessitated at least another follow up ultrasound.  But depending on when they would do a follow up, maybe we would have seen the low fluid or not.  I wonder if knowing about the low fluid and not the Down Syndrome would have changed anything.  Probably not.  But there would have been a chance of us not knowing about either. And since everything else has been normal (movement, fundal heights, etc), if we hadn’t done initial Down Syndrome testing, we would have been surprised at birth.

 

I might have ended up with a stillbirth, because we’d have no reason to induce.

 

Or

 

I could have a live baby.  I imagine myself in that birth scenario.  Unsuspecting, I’d first be surprised about how my baby looked.  Newborns with Down Syndrome don’t often look very different than typical newborns.  But I’m anticipating my baby has more pronounced features, due to the low fluid and potential Potter’s Syndrome (contractions of limbs and flattening of features).  I have no doubt I’d love this baby no matter how s/he looks, but the immediate expectation and reality discord could be overwhelming in itself.  And that’s just the superficial issues.  Without the knowledge we have now, I’d deliver under normal circumstances- in a normal labor room without pediatricians, meaning there would be a delay to care for my baby who will struggle to breathe at first.  And then slowly the other medical issues would become apparent.  My visions of raising one type of child would be so drastically changed in an instant.  I’d be adjusting to the diagnoses and prognoses as I tried to welcome my baby.  Grieving and trying to celebrate all at the same time.

 

Envisioning these now impossible scenarios makes me thankful that I know what I know.  Makes me confident that we made the right decision in opting for testing.  Makes me understand that the stress and anxiety will have been worth it.

 

Knowing about my baby’s health issues ahead of time allows me to have new visions and hopes for my child.  My baby will have the immediate care s/he needs.  My baby will likely be born alive.  I am prepared for a baby, no matter how s/he looks.  I have a new appreciation for the smaller things.  I will celebrate the little joys and victories all the more.

 

no regrets.

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4 thoughts on “To know or not know?

  1. I’m with you. I would want to know. When I was pregnant I really wanted to have a girl. I have 3 boys. I knew that I needed to know the sex of our babies before they were born so that if I was disappointed I could deal with that before hand and not the moment they were born. I can only imagine how hard it’s been on you to know your baby has health struggles to face. Just know you’re in my thoughts and prayers. All of you.

  2. I have had this conversation with myself a million times. What if our ultrasound tech had been a little less experienced and hadn’t noticed the slightest bit of pericardial effusion at my 20 week ultrasound? There would have been no follow up. There would have been no echos. There would have been no cutting edge intervention attempts. I would have had a stillborn baby — pretty much no question about that. And in the end, our outcome was the same….no baby. But it was no baby after a LOT of stress, two surgeries, a LOT of stress, uprooting the kids to CA for a month, a LOT of stress, a lot of travel expenses, a LOT of stress, the loss of my ability to ever labor again. But I agree with you…I got a chance to DO something for my baby. I got the chance to mother him in the only way I could – by making the best decisions I could to maximize his chances at a healthy life. It gives me a tremendous amount of peace.

    We are thinking of you so much MOC. I know it is hard to sit there on those monitors. I wish I was close enough to bring you a delivery of trashy magazines and junk food. xoxoxo

    • Yes! thank you emily- its been a thought constantly in the back of my mind- because I sometimes think if knowing about the DS wouldnt change my continuation of the pregnancy, why did I do testing. I would have had such a different pregnancy experience- I feel like I’ve given up so much. BUT you’re right, it gives me a chance to DO something for my baby. How better prepared (and not just emotionally) will we be- literally giving my baby a better shot at life. I’m learning its what one does for her kid.

  3. I found your blog from Roo’s and am hooked. You truly have a way with words and thoughts. We recently lost a pregnancy relatively early on, and knowing the reason behind that gives me so much peace. I wish only the best for you and your little one. Rock on, woman!

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