How can something with a defect be so wonderful?

Warning: This is a LONG post. Make sure you have a cup o' Joe close at hand...

When we arrived in Saudi Arabia, the first thing Michael's pediatrician did was to make an appointment with a pediatric cardiologist. In addition to having a slight heart murmur and the possibility of occasional use of the Epi-pen, Michael takes some prescription medication that can affect his heart. The doctor just wanted to get a baseline EKG and echo cardiogram (ultrasound) and a holter (basically a 24 hr. EKG that you wear). We thought it was a bit over the top, but with the health care system here, expensive tests are not even blinked at and there is no reason not to get the best care you can.

The EKG we could do immediately: we walked down the hallway to the radiology area and it took all of 10 minutes. They already had the order on Michael's networked medical file and just did the test. No waiting time at all. Keeping Michael calm leading up to the test wasn't nearly so easy. He saw the wires and completely lost it. It wasn't until the technician so skillfully explained that HE would be sending signals to the machine, not the other way around, that he calmed down. The test was normal.

The appointment with the cardiologist ended up happening the 2nd day of the household goods delivery. Michael and I went by ourselves while Steve stayed home to manage the chaos. We met with the doctor first, then walked down a hall immediately afterwards to the cardiology dept. in the hospital for the test (I love how everything is close by and convenient here). This time, Michael was calmer - especially when he saw that he had his own personal tv screen above the STRYKER bed to watch cartoons on. All of the equipment was state of the art, and the 30-40 minutes of video was saved digitally to Michael's medical file on the network. The technician saved over 100 different video clips of varying views of his heart.

After the test we walked back to the cardiologist's office, and he immediately pulled Michael's file up on his computer and watched the video. Then he asked Michael if he would wait for me in the waiting area. I think it was at that moment that my own heart stopped beating and all the air was sucked out of my lungs. Michael went out, shut the door, and then unbelievably...the phone rang. The doctor took the call - I was beside myself! Thankfully the call only lasted about 3-4 minutes.

The bottom line: Michael has a couple of heart defects in the left ventricle. For those of you who will immediately leave this post and go to WebMD to read about it, the defective valves are the Mitral and the Aortic. The mitral valve has a cleft in it where it attaches to the ventricle, making a little hole for blood to go back in when it should only be going out. The aortic valve should have three working cusps that open and close - two of his cusps are fused together making essentially only two working cusps. This also allows a bit of blood to flow back in where it should be going out. It is called bicuspid aortic valve (I don't know the term for the clefted one). I believe the murmur can be attributed to these defects.

I was a wreck - there were tears running down my cheeks and a million things running through my head. My thoughts ranged from the angry " Why has no one caught this before?" to the worried "Am I going to be able to accurately repeat all this to Steve?" to the sheer terror of, "Will he need heart surgery and could he die?" The poor doctor spent an eternity with me, explaining that Michael's "condition," was mild, and there was no reason to panic. What parent wouldn't?

In layman's terms...the danger lies in the amount of blood that is allowed to flow back where it shouldn't. Right now Michael's heart is small. The amount of blood going backward is significant, relative to the size of his heart. This puts a strain on his heart. As he grows, his heart will become larger, but the amount of blood going backward will remain the same - causing less strain on his heart.

Apparently neither of these are uncommon defects - he sees about one child per week with this condition. It is a mild enough case to completely rule out surgery. And the average lifespan is the same as someone without the abnormality.

The cardiologist said at this age not to limit him in any way, shape or form. He can be perfectly active - participate in any sport, with no consequences or dangers to his heart. We have to schedule repeat echo cardiograms every six months to monitor the valves (we will definitely do one in the US next summer for a second opinion). Any deterioration of the condition can therefore be caught within six months, years before any symptoms would show.

Other things we have to keep an eye on:

• Using the epi-pen: the epinephrine would put a strain on his heart. If ever administered, he will need to be admitted to the hospital (not just the ER) and have his heart monitored for at least 24 hours.
• Any fainting, dizziness, unusual shortness of breath.
• As a teen, he should not be allowed to do any strenuous weight lifting or other rigorous training (again, anything that puts excessive strain on his heart)
• He will need to have antibiotics before any dental cleaning or work is done. Apparently bacteria released during these procedures can enter the bloodstream and lodge in the defective heart valves where they can infect the heart.
  

I have to tell you - even as I type and relive this, it still freaks me out. One of the valve defects apparently has been found to be an inherited condition, so you can bet your *#% that we had Jake in the office within days to check his heart. This time Steve came with me and was able to ask questions I didn't think of, as well as get the reassurance he needed too. Jake's heart was perfectly normal - in fact, the doctor used his video as a demonstration of a healthy heart to contrast with Michael's.

Those of you who really know Michael, know that he has the most compassionate heart of any kid I've ever met. His heart is bigger than he his. Yes, he fights with his brother. But when he sees someone, something even, in need - he will do anything to help them out. He is kind, giving, empathetic. It's just who he is - not anything we have taught him. Therefore, just slays me that a heart so special can have a defect.

We haven't told Michael about the defects yet - there is no reason to at this age and frankly, he would worry himself into a nervous breakdown. We ask for your discretion as well (or to put it more directly, PLEASE don't mention it to Michael - we would like to be the ones to handle it when we feel the time is right).

This has been a very long post to read - if you are still with me, thank you! I will reward you with a very funny picture of Michael - I know after this I could use a chuckle! This was taken while he was doing the 24 hour EKG (holter), which incidentally, turned out normal: