October 28, 2008

October 28, 2008 - The Beginning of the End

October 28, 2008

The day our world stopped. The day we were told that part of our baby boy's brain had not formed. The day we had to make the most unimaginable decision of our lives.

We were scheduled into the high risk pregnancy hospital that afternoon for a number of tests because an ultrasound had shown that the ventricles in our baby's head were larger than normal. My husband and I made the 1/2 hour drive into Toronto and, to be honest, our spirits were hopeful. We certainly had a million questions, but how bad could it be right? I was 33 weeks and had several ultrasounds throughout the pregnancy - every single one was "fine" - until the last one. How could something so catastrophic not been seen earlier??

When we got to the clinic I had blood taken, then we had the amnio... and then the "detailed ultrasound" performed by one of the head doctors. He studied our baby for a long, long time (all the while making small talk). I remember him telling us about his daughter and a big house they had bought not too far from where we lived...I look back now and wonder how in the world he could talk so casually when he could clearly see the trouble our baby was in.

The doctor was called away for what felt like hours and during that time my husband and I tried to remain calm... we didn't know anything for sure at this point. My husband looked at the transcript from the previous ultrasound and figured things were fairly positive (he has some training in the medical field and can read the jargon). When the doctor finally returned he probed my belly again and asked if he and the doctor we had been seeing (who was now in the room) could speak with each other freely. Sure. I didn't understand a single thing they were saying, but something deep in my soul knew that none of it was good. I kept looking at my husband for some kind of reassurance.... nothing. He just kept shaking his head and looking really concerned. When my husband looks concerned I know there's trouble.

The doctors finished up and we were sent to wait in the waiting room... for what we now know was the worst news of our life.

We were taken into the genetic councilor's office and shut the door. Oh God...

"Part of the baby's brain has not formed at all" the words went through me like a sword. "There was some kind of insult to the baby", probably during or after my emergency surgery at 20 weeks, "There is a high chance that the baby will not make it through labour or for very long once he is born" .... my vision is blurry now, I am staring blankly at who knows what, I don't hear them anymore. "If the baby is born alive we cannot guarantee what quality of life he will have... with half the brain missing...." "Everyone has different views and ideas of what quality of life is....there are options for you." Options, are you serious??!!!

After a while we were left alone in that office.... to scream, to sob, to shake uncontrollably. Our first and foremost thought was that we did not want our precious baby boy to suffer. We did not want him to be born gasping for breath, struggling to stay alive. We did not want him on life support and we did not want our beautiful boy to be attached to tubes and needles. We also felt like we had to think about our two boys at home... there were 5 people to think about. I will never forget my husband saying that. I don't remember too much, but that I remember. It struck a chord and resonated in my breaking heart.

The decision to let him go, without a doubt, was the most heart-wrenching, soul-searing, horrendous decision we have had to ever, ever had to make, but I truly believe we made it out of love. I have to believe that we spared him the pain, the suffering that he would have inevitably endured, regardless of the outcome.

I pleaded with the doctors not to send me home that night.... I really didn't know how to face anyone. But there are policies, of course. We were sent home to writhe in our pain... to start grieving our little boy who was still actively kicking and pushing his mommy's belly.

We waited 4 days to get an MRI scheduled. The MRI was to 110% confirm the findings (which we were all for).

That was Friday, October 31, 2008 - Halloween Day. And that is for another post.

My heart and soul ache for you Nicholas..... we love you more every day... xo