Monday, May 4, 2015

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.

Thursday, January 1, 2015

Full Christmas Post

I was chopping root vegetables Christmas Eve when it hit me that a year ago I was doing the same exact thing prior to leaving for my in-laws.
But everything was different then.
In 2013 with every slice of sweet potatoes, turnips, parsnips, and the like, the knife made a loud thud on the carving board. I barely heard the loud noise, even though it echoed throughout the kitchen. A stiff glass of apple brandy with an ice cube sat next to the cutting board, and I struggled to look through red, swollen eyes. The bottle of apple brandy was my best friend Christmas Eve & Christmas.
Everything hurt and at the same time nothing hurt. Occasionally my brain reminded me that I was supposed to become a mother the next day, on 12/25, and at those moments it took all my strength to fight back tears and keep my hand from wandering to my stomach.
I tried so hard to forget, to forget the baby boy that was supposed to grace my household at that time. Tried so hard to stop reliving that day at the perinatologist where one by one our dreams crumbled. My husband having to leave the room to cry because he didn't want me to see the tears running down his cheeks, because he thought he had to be strong for me. As he watched me sob through the anatomy scan, as each measurement taken by the tech revealed no growth; as the tech searched in vain for areas of the brain that never formed in my fetus. He watched as I bit my lip and stiffened when the long needle punctured my skin and entered the amniotic sac, withdrawing fluid that we hoped would provide answers, but at the same time knowing that perhaps no answers were better than answers in this situation. As I implored and begged the little fetal heart to stop beating on its own.
Up until that point in time my husband was the only man in my life who never cried. He grieved the loss of olive for far longer than I, was afraid to touch me for months because the pain was still so strong, and spent every single day of my subsequent pregnancy in a pit of silent fear that history would repeat itself. Attempting to comfort himself in statistics, but there is little comfort in statistics when you have already been a black swan.
December 1 2013 I went to my psychiatrist and told him I wanted to try getting pregnant again in the new year, and I had to wean off my meds. Christmas without the meds that helped numb the pain of Olive's departure was difficult, hence the brandy. Hence the hiding alone in the basement, or bathroom, to stifle my sobs so no one would hear them. I surrounded myself with family that year, hosting my family and my in-laws, figuring that misery loves company. We could all be miserable together.
But this Christmas is different. In January, in a drunken haze, I decided to "try" for a baby again. One month later, after visiting a medium whose last words to me were, "Your grandfather wants you to know you should stop drinking coffee.", I took a pregnancy test; a second line glared back at me.
I sobbed. and I sobbed. and I sobbed some more.
It took me a week to tell my husband that I was pregnant again. I just couldn't do it. I wanted to hold all the fear inside me, and selfishly harbor the secret, so that in the event that something went wrong, whether I miscarried or receive another fatal diagnosis during the anatomy scan, only I would feel the pain. I desperately wanted to protect my husband from a repeat of what had happened with previous pregnancies, and most importantly, from reliving and repeating our termination for medical reasons. At that point we had not received results of the whole exome sequencing, so I did not know if the issues that were not compatible with life previously were genetic, which would increase the possibility of history repeating itself. No part of me believed that I would actually meet the ball of rapidly dividing cells that inhabited my uterus.
There is no bottle of brandy this year. There is no sobbing behind locked doors, or stiff embraces between us. There's no numbness. There is still pain, and there is still sadness, but it now lives in the ether around me and has become a fluid that I carry with me everyday. It ebbs and flows, it comes in waves that crash into me, and it often recedes just as quickly.
A year ago today I was convinced we were doomed to spend every Christmas alone. I never would have dreamed that only a year later, our hearts would be swollen with a love that we never knew was imaginable. I never dreamed the following Christmas there would be a bassinet sitting next to our bed.
I never dreamed I would actually be a mother.
But I am. And I was a mother last year also. A mother who had been faced with one of the most difficult decisions in circumstances that no one should face.
I type this with tears running down my cheeks. I still cry for the son that I never got to hold. That never got to feel the love of his mother. Having S didn't eradicate that pain, and it never will. The first few days after I brought S home I cried for the son I didn't bring home 10 months ago. S doesn't replace Olive. Nothing and no one will ever replace Olive. He will always have a piece of me, and he will always be a piece of me. He changed my life in ways much different than S did and ever will. My experience with Olive has made me a better mother to S, and has made the disenchanted scientist in me appreciate just how difficult it is to bring life into this world.
Olive also gave me another gift, as we learned he had a dominant mutation for ARVD - one that he inherited from me. Through this learning we had S tested immediately after birth, and he also has the gene and will now be followed by cardiologist for the rest of his life, despite the low penetrance of ARVD associated with the mutation. Our molecular learnings from Olive may eventually save S's life. And mine.
People, even family members, are often surprised when they learn that I still often think about Olive and the termination. They assume that since there is now a child in my arms, everything is okay, and that I just move on. It doesn't work that way.
A child born never replaces a child that never came to be. Life doesn't work that way. I carry both with me everyday, despite the fact that only one is tangible.