Our Journey Through TFMR

There are moments of your life that are burned onto your retina, and the script from the narrative lives within your mind; its quality, pristine.  That's how July 23, 2013 live within me.  It plays in the background, providing background music that is sometimes soft, and sometimes so loud that it overwhelms me, and I think it's it's July 23, 2013 all over again. 

The 19 week anatomy scan at Maternal Fetal Medicine that day took almost 3 hours.  I watched it on the screen until the tears overwhelmed me to the point  I could no longer see.  I closed my eyes and willed the world away.  I felt the table tilt back, "Sometimes this helps the baby move.", the technician said softly, but I continued sobbing knowing that truly, the technician knew I couldn't watch anymore because it was too painful.  My husband sat in an uncomfortable chair next to the table, quoting statistics, walking through p values, and standard deviation, trying to somehow rationalize the numbers we were seeing - the numbers telling us that our baby who was due on 12/25/13, would actually be arriving weeks later.  His face was white, his voice shook; he couldn't hide the fear that was welling in his heart.  But he never cried in front of me that day.  He held my foot during the amnio.  He tried to spout science to a scientist.  And he excused himself to the bathroom when he had to fall apart. He held it together because he thought he had to be strong for me.

When the MFM came in the room, she had a laundry list of things she wanted to discuss.  After each image she showed, she would say, "But that's even my biggest concern.".  Until she got to the pictures of the brain.  My fetus, the love that we had believed was the perfect combination of our genetics, was missing a large portion of his brain.  Did you know that it's possible for a fetus to develop sans cerebellum?  That for everything that makes a human a human, to be missing?  I'm a molecular geneticist by education; I live and breathe science. The one thing I had invested so much of my life in, had failed me.

The next week passed in a blur as we waited for our "day of testing" at Columbia-NY Pres, to meet with the experts, the doctors who had the tools to perform fetal MRI, fetal surgery, hell, they can use a printed 3D heart to save a baby's life .  They could fix our future, right?

They couldn't.  The human brain is perhaps one of the most complex structures that exists; when the main functional areas are missing, there is nothing that can be done.  My fetus wasn't even moving in-utero because the programming just wasn't there.  His limbs, which were weeks behind, were unable to receive signals to move - to punch me, to kick me, to suck his thumb like we see in oh so many cute ultrasound pictures.  

I am a mother; yet the most important decision I made for my child was the decision to end his life before it even properly began.  This decision was the ultimate act of love, of compassion, of empathy that we could have given to him.  We ceased his suffering, and we made the decision to shoulder it on our own.  There is no shame in that decision.  There may be people who try to vilify us for decision; but those people do not understand.  You don't understand the position anyone who opts to TFMR until you sit in their shoes.  When you're laying on the table, or sitting in an uncomfortable chair, and expert after expert is telling you the same thing; that your child will never know that s/he exists, and will likely live in immense pain, if he was able to make it through gestation and birth.  Do you know how hard it is to stare someone in the eye, and tell them that their 20 week old fetus, an amalgamation of two people so in love that they created a child, that their little one is missing a vital organ, or a piece of their brain, and will never, ever live a day on their own?  Or if that they do have the opportunity to breathe a few gulps of air, they will be in infinite pain and will remain that way until they pass ?  Do you know how difficult those words are to deliver to a couple whose hands are intertwined beyond belief, with tears running down their cheeks, their hearts in pieces on the floor, and their minds and souls on another world? 


My husband and I always imagined that I would break his hand during delivery, while his son was entering the world around his estimated arrival date; he never imagined I would be doing it nearly 4 months early, when we both knew the baby would never survive.

The loss of a fetus, or a baby, whichever term you prefer to use, whichever one brings you peace, is a record that doesn't stop; it's a soundtrack that is played on repeat; a symphony whose movements transition from joy and happiness, to sadness and despair in an instant.  And this song plays indefinitely in your mind, and it radiates through you, and it influences every decision you make; whether or not you even realize it.  Life changes.  Life is never the same.

We made the decision to shoulder a lifetime of pain so that our little one would never have to feel a moment of pain.  For us, that is the ultimate gift of love and compassion.  It is the only act of love that we were able to ever show "Olive", and, for us, it was the best gift we ever could have given him.