Highlights from the Pediatric Cardiologist

First of all, our appointment was at 10:00, we arrived at 9:30 and left at about 1:00.  During our time in the waiting room there was another pregnant couple who was freaking out because their kid has a small hole between the ventricles.  That’s it.  I kind of wanted to punch them because I was sitting there trying to keep it together terrified they were going to tell me that my son had no hope today – and their kiddo is fine.  The doctor came out said “Your baby is going to be fine.  Don’t even worry about this, it’ll most likely fix itself and won’t require surgery – maybe medication”.  Have that talk in your office!  It pisses those of us with really freaking screwed up kids off….

That said-

This appointment was not what I had expected.  I thought we were just going to meet with the doctor and discuss all of the tests that had been done so far.

Instead, they did a study, which was an ultrasound/echo that took about an hour to map out Rowan’s heart.  The result is what they used to give us a picture of what Rowan’s heart looks like.  So here are the highlights.

• Hypoplastic Right Heart – the small ventricle is however connected to the left ventricle through a really big hole (called a VSD) that means it is receiving blood flow.
• Transposition of the Greater Vessels – the Aorta and Pulmonary Artery are switched at where they should plug in.  It also appears that the Aorta is slightly smaller than the pulmonary artery.
• A GIGANTIC connection of the Pulmonary Artery and Aorta.  The picture shows that it’s larger than normal…but the doctor said it’s actually bigger than the Pulmonary Artery.
• Undeterminable completion of the Aortic Arch – this was the scariest thing.  We cannot verify that he has a complete Aortic Arch, and without that, he would need a transplant to have any hope.  They do not really have a reason to believe that there is a problem, they just cannot prove that it is okay right now and will not be able to until he is born.

What all of this means:

• His defects actually create enough open blood flow that it is possible he could be balanced out enough to not need the NICU and come home after he is born to wait a while for surgeries.  His heart has compensated remarkably well for the HRHS, which most likely started this whole mess.
• He will need a ton of testing when he is born for us to determine the best surgical course for him.  He will still require surgery regardless of how stable he is when he is born.
• No C-Section or scheduled induction is necessary – the Docs will all be in town and they have no issue with a vaginal delivery!  This means I am much more likely to be able to visit the NICU and see Rowan if he needs to be there.
• Upcoming visit to the NICU – she suggested we tour the NICU, just so if we do need to be there, we are somewhat prepared for what we will see.
• The later he is born the better!  My due date is Dec. 16th and we want to be as close to that as possible.  “Full term” is often defined by OBGYN’s as 37-38 weeks.  Pediatric Cardiologist will always define it as 40.

All in all, I wasn’t expecting good news.  I had given up on the idea that I would even get to hold my son before surgeries and knew there was very little that I would be able to see him.  I had resigned myself to spending Christmas living at the hospital and several weeks away from my husband and daughter.  The fact that there is even a slight possibility that I could hold him and nurse him and take him home is overwhelming.  All I want for Christmas is a miracle.