August 2013. One month to delivery.
I was eight months pregnant when our unborn son was diagnosed with a potentially fatal heart condition called Ebstein’s Anomaly (which was later re-diagnosed to Pulmonary Atresia with intact Ventricular Septom). The right side of his heart was too small to support his heart, the pulmonary valve wasn’t formed correctly and the artery leading blood from the heart to the lungs was completely closed. He would need immediate open-heart surgery upon birth to live.
There was nothing more horrifying in that moment than being told he may not make it past birth… and yet I could feel him kicking me in that moment. It was then that I knew that the pediatric cardiologist in front of me had already given up on my unborn child — after ONE, thirty minute echocardiogram. If he made it past birth, the cardiologist wanted to recommend sealing off the right side of the heart — just so he wouldn’t have to deal with it. The words “no hope” literally came out of his mouth. He told us that our son, “if” he made it out alive, would “maybe” only live into toddlerhood, “maybe” into teen years, but then he’d have to have a heart transplant and then he’d only have “maybe” ten years after that.He gave our son a solid 20 years, but that’s it. If he made it that far.
Literally, the words “no hope” came out of his mouth. No hope that anything would get better. He wouldn’t be able to do sports, like Little League, or be normal.
Then this cardiologist said the two words that gave me the knee jerk reaction of “You will never lay a finger on my child”: Cauterize. He said it would be easiest just to close off the right side of his heart, completely, permanently — for convenience.
After reassuring us that this heart condition is not genetic and is very rare, he then proceeded to explain that what he would have recommended — had we found out much earlier in the pregnancy, at around 2-3 months — to abort.
My jaw dropped when he said this. Abort a three month fetus because it has a heart condition? Over my dead body.
With a simple sorry, the cardiologist before me walked out of the room. Leaving my husband and I beside ourselves with shock and horror.
And no tissues.
Which we had to find ourselves.
My husband and I mourned the loss of our son. I thought that the kicks within me would be the only time I knew my son alive. The cardiologist had us so convinced he wouldn’t make it, that we weren’t going to buy a car seat. Even so, I refused to give up. My son was still alive. As long as I could protect him within me, I would go anywhere to find hope.