I have included a email correspondence below to one of Joshua's many doctors. It goes into some additional details and possible theories.
Hello,
The main reason I called after Josh’s birth was to share the joy of his incredible postpartum results. But just as important, I wanted to discuss the possible reasons he was able to reverse from third stage heart block. I believe that there could be a simple explanation related to my wife's diet, multivitamins or medication that she was on during her pregnancy.
Before I called you, the main thing that stuck in my mind was her prescription for Omeprazole. My wife had recurring acid reflux throughout her third trimester. Beginning July 18th she began taking 20 mg of Omeprazole daily to relieve her discomfort. That was about 3 weeks before delivery. The start of her medication lines up with the steady progress (increased heart rate and more A/V conduction) that Josh began to see 2 or 2 ½ weeks before delivery.
I did some preliminary research online. In a nutshell and in layman’s terms, here’s what I found and my theory regarding it. I first looked to see if Omeprazole is passed on to the baby through the placenta and I found that it is. Then I looked to see if this medication can affect the heart in any way and in short, it can. In fact, initially there were studies done which raised concerns that long-term use of Omeprazole may increase the risk of heart attacks, heart failure, and heart-related sudden death. Therefore, there is some connection between this drug and the heart. This may or may not have significance but it is worth noting.
I began looking at research relating to the cause of prenatal heart block. In 2001, a team of researchers at the University of Alberta discovered and I quote, “transgenic mice die of heart block and sudden death when a key protein, calreticulin -- vital for the normal development of the heart -- is abnormally expressed.” In addition they showed, “in previous work that calreticulin is highly expressed in the developing heart but is down-regulated in late embryonic stages and is maintained at very low levels in mature hearts”. In summary, they were able to create mice with heart block by over-expressing the protein calreticulin after the heart was mature.
After reading that article, I researched the protein calreticulin and found that this protein is held in storage compartments within heart tissue called endoplasmic reticula. I speculate that the reticula falter (in this case, over-express) in the presence of anti-Ro/SSA-positive antibodies. Therefore, there is no longer a controlled release of calreticulin, in-turn causing heart block in a mature fetal heart.
I then researched endoplasmic reticula in general. It turns out that endoplasmic reticula are also in the lining of the stomach and intestines (as well as throughout the entire body). The reticula in the digestive track are the storage compartments for the proteins needed for digestion. In fact, the drug Omeprazole and all drugs of this type work by affecting the reticula. These types of medications are classified as protein pump inhibitors, PPIs. They turn off these protein pumps thereby reducing stomach acid.
So, all this leads me to theorize that Omeprazole limited the abnormal release of protein (calreticulin) in Josh’s affected heart in the same way that it limited the release of protein in my wife's stomach.
Ok, now for a little more optimism and hope. As you know, currently steroids offer limited effectiveness in certain stages of heart block and they have no effect in third degree. If the use of Omeprazole proved to be successful in the treatment of third degree heart block, it could also open up a bigger window to treat heart block in general. After all, Josh showed steady improvement around week 35 after being diagnosed with third degree heart block at week 20. With further research it may be possible to give Omeprazole (or another PPI) as a preventative measure to expectant mothers (pre-congenital heart block) who test positive for anti-Ro/SSA-positive antibodies.
I am by no means an expert on the subject, in fact, quite the opposite. It seems that something my wife did though changed Josh’s outcome. Again, the time when she first started taking Omeprazole and the time when Josh began to show improvement correlates. After doing a little research it seems to make sense. However, my theory and the way Omeprazole affects the heart and heart block may be way off. Maybe it affects it in a completely different way or maybe not at all. It is still possible that there is some other variable which affected his outcome. But I think the Omeprazole connection should be explored.
The nice thing is that Omeprazole is the generic form of Prilosec. Prilosec is available over-the-counter as Prilosec OTC and an over-the-counter medication versus a prescription would seem to have far fewer hurdles to overcome when applying this medicine to fetal heart block cases. Therefore, Prilosec’s effectiveness on treating or preventing heart block could proven or disproven relatively quickly.
Please give me a call and let me know what you think. I believe there is enough here to do additional research. Hopefully you be able to take this on in light of your other commitments. My wife and I will put together a list and a timeline of the other things that could have made a difference and forward it on to you.
Thanks,
Eric