Tuesday, June 16, 2009

Reuben's heart

Internet pic of the membrane

When you go in for a routine cardiogram, you don't expect to come out with the news that Reuben will likely need another bypass heart surgery sometime in the future. Dr A diagnosed him as having subaortic membrane, extra flaps of tissue where Dr Starnes placed the patch to cover his VSD (one of his holes in his heart) and another just above this flap. Dr De Oliveira wasn't available so we weren't seeing our regular cardiologist, but indeed, the Dr who was originally involved in developing a plan for Reuben in the early days alongside Dr De and who envisaged seeing Reuben aged 1 playing happily but having been through a "frustrating year". The membrane potentially obstructs the aorta and the free flow of blood, like a flag flapping in a tunnel would redirect the flow of air.
I spoke to Dr De last night and she's looking into it and, as always, tries to calm me down from panicking too much. She knows Reuben's heart very well, having been there just a couple of hours after his birth to deliver the news of a congenital heart defect.
It may not have the intensity of Reuben's multiple repairs at 3 months (TET: VSD, ASD, CoA, pulmonary stenosis, subaortic membrane), but open heart surgery is the most harrowing experience we've ever been through and the thought that it now lies hanging like a destiny, flagged with an uncertain date, but seemingly unavoidable, leaves my own heart so very heavy.


Kristi said...

Hi Catherine,
So sorry this was the news at the cardiologist. We are never prepared for this kind of unexpected news...

Gracie had this, too. It was diagnosed 22 months post-op from her initial heart surgery. We were informed that it was not uncommon for this to happen and had, in fact, been informed prior to her first surgery that this was a possibility.

Gracie's was removed in December 2006 - - at the same time as another repair and patch to her mitral valve. The subaortic membrane, while large, was not affecting her heart function enough at the time to warrant surgery on its own. I hope that your Dr. finds the same with Reuben's and that repair can wait until a later time.

Thinking of you,

Sara said...

Oh hun
So sorry to hear that new, but you know what a little fighter he is.
Huge hugs to all of you, esp Reu!

The Claytons said...

I understand where you are coming from when you go to the dr. and get that kind of unexpected news. The same thing happened to us with Christopher in January, had a heart cath in February and now faces heart surgery in 1 - 2 years. Just remember he will do great no matter what he has to endure! Maybe as the other dr. reviews it it will be able to be waited out a little bit!

In my thoughts,


Eva Nichole said...

First of all GREAT Pics!! ALL of them always are great!
Sorry about your cardiology appointments and I hope you can get some answers soon and whats going to happen and when.
I will say a prayer for Reuben tonight.
Crystal and Eva