No One Tells Us Babies Die

On the plane I was reading a Real Simple magazine.  In the issue they had a writing contest- tell us about a time when you were brave.  The winner was a woman who wrote about taking her 3 day old son off the ventilator.  Her baby was significantly premature and suffered from a severe brain hemorrhage, so his prognosis was dire.  She and her husband did not want their son to suffer so made the choice to withdraw life support and make him comfortable as he died.  I read that article and my chest got tight- with both sadness and a small amount of excitement.  Excitement might not be the right word, but I was overcome with the urge to shout “me too!”  To let this woman know I’ve been there too.  I wanted to hold up the article to the person in the seat next to me and say this article is about me!

No one tells us babies die.  I, of all people, should really understand that they do.  I’ve seen it.  But deep down inside, I thought modern medicine would win, especially if my baby was not stillborn.  I can oddly comprehend the incomprehensible- that sometimes babies died in the womb for no reason at all.  Unpredictable and unavoidable.  But once they’re come out, shouldn’t we be able to save them?  I’ve seen babies born on the cusp of viability, with their weight measured in ounces rather than pounds, grow and live.  How could my baby, who made it to near term and was a hearty weight for 36 weeks, not respond to all that modern medicine had to offer?

I had an ultrasound at 22 weeks that showed normal fluid.  My next one at 27 weeks showed low fluid.  So we knew that sometime in between those times the fluid became low.  If the fluid was low 22-24 weeks, my baby had essentially no chance.  If it became low later, there was some chance.  Once Mabel was here, there was no way to say when that fluid was low, but I can make my guesses.  She died because her lungs were just too small.  They weren’t developed enough.  Babies have a chance of survival after 24 weeks because their lungs have passed the most basic of milestones and could potentially respond to ventilation.  I think my baby had lungs of a 22 week baby.  While I was pregnant I think I really just assumed the fluid became low after 24 weeks.  I knew that still meant she could die, but I thought she at least had a chance.  I don’t think she did.

Am I glad to have not known?  At 33 weeks I wrote “The unknown can sometimes be better than a known sadness.”  I think that’s true.  The unknown leaves room for hope.  The decisions we had to make were hard, but also more welcome than some others.  We chose to hope for life.   If Mabel was given a fatal prognosis, I might have been able to deliver early, bury my baby and move forward.  It was even something I talked about with my high risk doctor.  But we thought Mabel had a chance, and I’m glad.  Making that choice might have left me with a lingering wonder- what if I went to term, would it have changed anything?  Because there was uncertainty, there was hope, be it small, and the choice was then easy.  We made that choice at 13 weeks, when we learned Mabel had Down Syndrome- we hoped for life.

No one tells us babies die.  They do.


2 thoughts on “No One Tells Us Babies Die

  1. I’ve been following your story since Roo first introduced it on her blog, and even though we are total strangers, I’ve been deeply touched by all that you’ve bravely shared here. I am so very sorry your beautiful Mabel had such a short time on earth. I don’t have the words to fully express all that I’ve been thinking and feeling, but I wanted to let you know that your Mabel matters to me. Thank you for sharing her, such a gift. Keeping you all in my thoughts.

  2. I have to say – I was having a rough remembering morning, when I opened that Real Simple over my coffee to that exact story. I felt that same “me too!” excitement (followed immediately by jealousy that she won a writing contest :)). I was so grateful that that story was told though. Because babies die, and more people need to know so that there isn’t so much stigma surrounding it!

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