Cardiology Update

We had Clayton's cardiology check up on Monday.  His EKG looked unchanged, and he sounded great, so we were able to skip the echo.  Clayton weighed 28lbs even, and his oxygen sats were 82%, slightly decreased, but not too bad.  We'd like him to stay in the 80s, if possible.

The normal topic of conversation was then discussed.  When will this boy weigh 15kg (33lbs)?  Well, not anytime soon is the best estimate.  He is gaining, but it is very, very slow (1 pound this last six months).

For now, we plan to go another six months and then see where he's at weight, sat, and cardiac-wise.  At this point there seems to be no need to rush into a Fontan.  Clayton's heart function is good, and his valve leaks do not seem to be causing any problems at this point, so we're just waiting.  There may come a day when we have to just bite the bullet and do this surgery, but that day is not here yet, so for now, it's just wait and see.

FYI- There are two different ways to do a Fontan.  Clayton will most likely receive the extra-cardiac version, which is preferred by Stanford.  In this procedure a conduit is placed around the outside of the heart.  If the child is 15kg, it's likely they can place a conduit large enough to last into adulthood.  If a smaller conduit has to be placed, the surgery will most likely need to be repeated around puberty, which is what we are trying to avoid.

The other Fontan method is a lateral baffle, where the pathway needed is created within the heart using actual heart tissue.  Because a child's own tissue is used, this "tunnel" will grow with the child, so their size at the time of surgery doesn't really matter.  These children typically have their Fontans earlier than the extra-cardiac kids.

There are pros and cons to both.  From what I've seen, the extra-cardiac may be a little more popular, but not by much.  One down side to the lateral baffle is that many kids eventually require a pacemaker, something that is more often avoided with the extra-cardiac version.  I think that's the biggest reason Stanford prefers the extra-cardiac Fontan at this time. 

These procedures in HLHS kids are still developing and continually changing, and only time will tell which methods produce the best long term outcomes.  We're so grateful there are treatments available.  When I was born in 1980, there were no treatment options.  I probably would have died before anyone knew what was wrong with me.  When Colin was diagnosed in utero, an older pediatrician at my church approached me and told me that when she was in med school, hypoplastic left heart syndrome was taught as a condition "not compatible with life".  A lot has changed since then.