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.
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.