When Life Gives You Lemon-Shaped Tumors

The Bomb

I have thought of a thousand ways to start this blog post and have crafted and edited it repeatedly in my head but to no avail. There is simply no easy, eloquent, funny or sensitive way to say it:

My baby has a large tumor growing inside his heart. 

The tumor is most likely attached to the interventricular septum and within the last eight weeks has grown significantly and is blocking blood flow from the left ventricle into the aortic valve. Apparently, the blockage is so great, barring a miracle, he will need surgery to remove the tumor and possibly replace his heart valve after birth as long as our little guy makes it that far. 

I am only 28 weeks pregnant and the doctors won't perform open heart surgery on a baby until at least 37 weeks. So for 9 more weeks, we get to hope and pray that the tumor's growth will slow and that our little boy will make it to birth and have a successful surgery afterward. 

The Specifics

This is an extremely uncommon scenario and because of that we are entering into an entirely unknown world with very little studies, statistics or information to help us or even the doctors understand what is going on. Most commonly, fetal cardiac tumors are rhabdomyomas and are associated with a genetic disease called tuberous sclerosis. Our little one's heart tumor doesn't seem to fit that category so we are in even more ambiguous territory. 

Fortunately, because of a little duct that fetuses have, called the ductus arteriosus, our baby should be able to survive until birth at which point that duct starts to close and immediate intervention will be needed to save his life. Stupidly, pediatric cardiac surgeries only occur at Seattle Children's and you cannot give birth there so we will deliver at Swedish and then rush Dad and baby to Seattle Children's via helicopter or ambulance while I get the "luxury" of recovering in a place where they have proper care set up for me. GAG. Talk about an oversight - somebody with a lot of money needs to invest in a labor and delivery unit at Seattle Children's for scenarios just like this. 

Currently, because of the stress his heart is under to pump blood pass the blockage into the aortic valve many things could develop poorly including a thicker heart muscle, fluid buildup around the heart, tissue calcification, or - if the blockage completes - a total shutdown of the left ventricle meaning it would stop developing at all. So far we have miraculously not seen any of these negative effects. 

The Outlook

Right now, our doctor believes our little newborn will undergo open heart surgery to remove the tumor, and most likely replace the aortic valve which she thinks has been damaged by the tumor. The procedure is called The Ross Procedure and the surgeons will replace the aortic valve with his healthy but not as critical pulmonary semilunar valve which they will replace with a fabricated tube of some sort. Unfortunately, even if all goes well in the surgery he will need many more surgeries throughout his life to update that tube as he grows. 

Best case scenario, is that when they go in for the surgery they discover the tumor hasn't damaged the aortic valve and his heart will be back to normal once the tumor is removed. Of course the truly best case scenario is that the tumor will miraculously stop growing or even shrink and they won't need to do surgery until he is much older to remove it...but... well... what the heck,  miracles do happen, so why not pray for that. 

The Feels

I have good days and I have bad days and today I felt like just divulging the news in a very straight informative manner. I think I will find therapy in writing to document his progress and our experience and I admit up front that I tend to be much more optimistic in my writing than I feel, but in the coming weeks I will address my emotions a little better including how I want to handle this with you as we go on this journey together because I will totally need and rely on my friends but just don't know how. I will say, I don't do well on the phone, but I would love it if you dropped by or sent an email and when I'm feeling responsive or brave enough (which comes in random spurts) I will get back to you. 

This is a crazy trial I never dreamed of having and really really really do. not. want. But, sometimes when life gets too good and our faith gets lazy, God finds a way to knock our legs right out from under us and force us back on our knees in the most desperate way.

Point taken.