Saturday, September 28, 2013


So we went to the cardiologist yesterday.  For an hour I lay on a warm bed in a dark room and watched my baby and tried not to fall asleep.  How in the world the doctors and technicians see anything is beyond me.  Especially something as little as a heart in an 18 week old fetus.  They measured every wall, listened to every individual valve, watched every bit of blood flow.  It's incredible.  Miraculous really.

Which brings me to my next point.  Chopper and I are not praying for a healing miracle.  We don't feel right about that.  We are praying for the miracles that are already occurring: amazing doctors and incredible technology that will help us prepare and give our son the best chance at life that he can possibly get.  We are praying for the miracle of insurance to help cover costs.  Most of all, we are praying for the miracle of being able to have understanding, strength, and peace as we climb this very large mountain.  We are already receiving that miracle.

So on to the diagnosis.

So this is the heart.  There's one thing I would add to this picture -- a ductal arch that diverts blood from the right ventricle and pulmonary artery just away from the heart because as a fetus, the blood does not go to the lungs. That's important. 

The primary diagnosis is called Pulmonary Atresia.  The pulmonary artery takes blue blood from the right side of the heart to the lungs for oxygenation.  Aaron's artery was there but something has caused the pulmonary valve (from r. ventricle to artery) to close and the pulmonary artery itself has narrowed significantly.  In utero, the baby doesn't need blood to go to the lungs so it's shifted around by a vein specific to a fetal heart called the ductus something or other.  In a normal baby, that closes after birth once blood starts going to the lungs.  The lack of blood flow to the lungs after birth will cause a blue baby because of all the unoxygenated blood running through his system.  Like literally blue.  I'm not sure how blue, but blue.

If that were the only problem, they would put a shunt in or replace the branch of the artery that's closed and we'd be good.  Unfortunately we have some complications.  The right ventricle has developed some coronary sinusoids which are present in all babies but close after a while.  Because of the build up of blood that can't get through these haven't closed all the way.  Our Dr. kept referring to them as little lakes in the wall between the r. and l. ventricle.  The tricuspid valve between r. atrium and r. ventricle is also not working properly.  Basically the blood that comes into the right side of the heart has nowhere to go and is damaging the walls of the right ventricle.  If a shunt is put in, the change in pressure on the right side would cause the baby to have a heart attack and die.

The Dr. has asked us to seek a second opinion particularly regarding the coronary sinusoids because they are causing so many difficulties in options for repair.  Her first choice for that 2nd opinion is in Philadelphia but her 2nd choice is here in Dallas.  I think that we're going to consult that 2nd choice and then if their reports conflict or if she even feels we need more information then Philly will be our tiebreaker option.

Right now we're looking at 2 options, neither of which are a fix but more of a what can we do to give him some chance at life.  The sinusoids may change that later on, particularly if they get worse.  But right now option #1 is a series of 3 surgeries.  #1 happens when he's 3-4 days old and the lungs are inflated and have descended into the chest cavity.  He would be on drugs from birth but at that point they would go in and put a shunt in the ductus to keep it open after birth.  Stage 2 is 4-6 months and they would connect the pulmonary artery to the superior vena cava so that blood flow can get to the lungs.  Stage 3 is sealing off the right ventricle.  He would have a 3 chamber heart for the rest of his life and I'm sure follow up surgeries as he grows but his blood will also be fully oxygenated at that point so he won't be blue anymore, he'll be pink like the rest of us!  Option #2 is heart transplant.  That's the option we may have to take if the sinusoids get worse.  What I hate about that option is of course the high risk of rejection but it really makes me feel horrible thinking that someone else's baby won't make it so my baby can have a new heart.  But then, if  we end up in those shoes, we would donate the organs for sure.  Well, no one will want the heart!!  But everything else looks good!!!

So that's it!  If you have questions don't ask!  I'm still trying to understand it all myself!  :)

Despite all this -- I still love watching him on screen and he is a mover!!  Both ultrasounds we've had so far have had a hard time with the pictures because he will not hold still!!  We know he'll never be a star athlete (although that's genetic, it really has nothing to do with the heart defect!), but he is active.  I hope that means he's a fighter!  And for now, he's safe right here and I'm really grateful that I don't need to stress about the actual pregnancy but can get ready for what comes after!!

1 comment:

Krista said...

I've been following all of your posts on FB, and just read this. Miss you and love you! I've been thinking about you constantly. I'll call soon. -Krista