Tough Decision

Monday, December 8, 2008

Have I mentioned how bad I am at making decisions? I mean meaning little decisions like, what to eat, where to eat, what to wear...stuff like that. So, with that said, making a major decision about my son is becoming impossible!! Just when I thought I had everything with Jack under control and I was confident in my decision not to have the heart cath...I get this...

(this is the response from Dr. Breitbart to Brian about our questions/concerns with having the heart cath procedure)

...I am very glad to know that Jack is doing well. Let me clarify one point before I respond to your question about the risk:benefit ratio of catheterization. Hearts with so-called L-looped ventricles—ventricular inversion, i.e. left ventricle on the right side and right ventricle (or remnant thereof) on the left side—are at risk for developing permanent heart block spontaneously, as well as during catheterization or, indeed, surgery. This is because the heart’s conduction system (biological “wiring”) connecting the atria to the ventricles is abnormally formed and tenuous in these hearts, such that it fails in some cases (approximately 20% of such hearts). It is true that the conduction system may be temporarily or permanently disabled by minor if unavoidable catheter impact, but this is likely because of its intrinsic vulnerability in ventricular inversion rather than because of the particular catheter course.

Regarding your good question about the reasons to incur even the small risks of catheterization, the answer is that they are far outweighed by the risks of NOT doing so in children such as Jack with single-ventricle hearts. The ultimate success of the Glenn and/or Fontan surgery hinges on several key elements of cardiovascular physiology—particularly pulmonary vascular resistance and ventricular diastolic function (let me know if you want me to explain these)—which cannot be measured either by physical examination, echocardiography, or other non-invasive testing. Although these are probably OK in Jack, we cannot be certain of this without catheterization. If they are not OK, it is essential to know that sooner rather than later, because our ability to reverse such problems declines the longer they are left untreated. We would certainly prefer to have a completely risk-free method to determine this but, again, we believe the risk of not detecting and managing such problems is greater than the procedural risks of catheterization, including heart block...

WOW...so my child can just drop at any point with heart block...I love that I am just now finding out this information. After I read his email, I cried and then I got so frustrated. Just when I think I understand all there is to know about Jack’s heart, someone throws a curve ball at me and knocks me down. I don’t see how other families do it. I have a back ground in Human Anatomy and a huge understanding of how the body works, especially the heart...and I get so confused and mad at myself for not thinking of these things. I don’t like surprises...especially ones about Jack’s heart!! Brian and I just don’t know what to do. We have formulated so many questions to ask back to Dr. Breitbart and to Dr. Pearce. Not only do we have to re-decided whether to have the heart cath, now we have to decided to have it here at UAB or go ahead up to Boston in the off chance something happens.

Just when I think that nothing else can happen and I am finally moving forward, something like this happens. The worse part is I feel like it is only going to get harder as he gets older...