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Welcome,

My name is Eric and this is a website that I wanted to create in order to inform and hopefully make a difference in someone's life.  I will try to keep everything short and to the point.  I will not go into a lot of detail when it comes to Lupus or Congenital Heart Block (CHB).  There are many expert sites online that can specifically discuss each one of those subjects.  My goal is to tell you my son Joshua’s story because it appears to be, according to his doctors, the first ever of its kind.

 I am a very proud father of four incredible children.  My first daughter was diagnosed with Congenital Heart Block (CHB) soon after her birth and at that same time my wife was diagnosed with Lupus.  My daughter's heart block was considered third degree.  She did not have a strong ventricular rhythm and her resting heart rate was very low at about 45 bpm.  Therefore, immediately after diagnosis she received a pacemaker.  She is doing very well and she is expected to live a normal healthy life with the occasional pacemaker/battery change every 8 to 10 years.

My next boy and girl were born healthy with no heart issues.  In 2008, my wife became pregnant with our fourth child, Joshua.  My wife was having more frequent visits (monthly*) with her doctor then typical because of her previous diagnosis with Lupus and our prior child with CHB.  At week 20 of her pregnancy, Joshua’s heart rate which was a strong 150 bpm at the prior visit had dropped to 75 bpm.  This was a bad sign that the Lupus antibodies were affecting Joshua’s heart.  We were put in touch with a number of doctors who were experts in fetal heart issues including CHB.  In the coming days we traveled to different parts of the state to perform tests and discuss treatment options.  One of the tests was using a highly sensitive instrument (one of several in the world) which was able to non-evasively detect and separate a fetus’s heart rhythms from its mothers.  After analyzing the results, we were very saddened to find that Joshua without question had third degree heart block.  We then discussed treatment options even though there have never been any documented cases of reversal from third degree CHB.  In short, after an initial treatment of steroids and a later supplementation treatment of magnesium and calcium there was no change to Joshua’s heart condition.  A number of weeks after initial diagnosis, treatment was discontinued and it was concluded that Joshua would be born with third degree CHB.

During the next several months my wife continued her doctor visits.  As a precaution, later in the third trimester my wife’s doctor visits were increased to weekly. During those visits there were no changes to Joshua’s heart rate and it remained at 75 bpm.  However, two and a half weeks before birth she went into her doctor and to everyone’s surprise Joshua’s heart rate had improved!  It was now varying between 100 and 150 bpm.  And over the next couple of weeks it improved even more.  In fact, on the day of his birth his doctors determined that Joshua's heart rhythm was considered normal and that he had reversed from third degree heart block!  My wife and I were the happiest parents in the world and we knew that Joshua had truly been blessed.  The doctors were amazed because they had never seen or heard of anything like it.  My wife and Joshua stayed in the hospital over the next couple of days and Joshua’s heart remained strong.  We brought Joshua home and we knew that what he experienced was definitely a miracle.  We later named it the Joshua Effect.

After returning home, the next few nights I laid awake in bed thinking about the Joshua Effect. I have a very strong faith and I believe that miracles happen every day.  I am an electrical engineer and I have a very analytical and logical brain.  So I couldn’t help but think to myself, how is it possible to reverse from third degree CHB?  I started thinking about cause and effect.  What could have caused this outcome?  That second night I went to sleep thinking about it.  Then out of a deep sleep I sat up in bed and said that’s it!  I remembered that my wife was complaining of acid reflux late in her pregnancy, which is very common in the third trimester.  I knew she was prescribed something for it but I had forgotten what and when.  I jumped out of bed and grabbed her prescription and I looked at it.  It was a prescription of 20 mg/day of Omeprazole and it was prescribed 3 ½ weeks before his birth.  This totally lined up with the steady improvement that we saw during my wife’s last doctor visits.  Is it possible that this drug reversed third degree CHB!!?  I think I was up most of the night doing research online.  I looked into Omeprazole (which is better known as Prilosec OTC) and how it worked.

Long story, short, after researching Omeprazole it seemed to me that it could have been responsible for the reversal.  I presented my findings to the doctors who tested and treated my wife and son.  Here is an email I sent regarding my findings and possible theories.  They in turn put me in touch with some of the leading researchers of CHB.  When I spoke to them there was definite excitement and I became even more optimistic.  I left it in their hands, hoping that they would start a research study to see if there could be a connection between Omeprazole and CHB reversal.

Now you may think that the story ends here.  Well, it doesn’t.  About six weeks after birth my wife and Joshua had a follow-up visit.  Our earlier happiness turned into sadness when we found that Joshua’s third degree CHB had returned.  Further tests confirmed this. However, the good news was that Joshua had a very strong ventricular rhythm and a relatively high resting heart rate.  Therefore, he did not need a pacemaker immediately.  Today, Joshua is the happiest and most full of life child you would ever meet.  He still has third degree CHB but presently he does not have or need a pacemaker.  The hope is that he can go as long as possible without one.  When he is older and more active it is more likely that he will need one.

After finding out about Joshua’s return CHB I again thought, how is this possible?  I did some additional research relating to Lupus and CHB.  It turns out that the Lupus antibodies which are the main cause of the CHB can remain in the baby’s bloodstream for months after birth.  My thought is that once Joshua was born, he was no longer receiving Omeprazole from my wife.  In turn, whatever protection, interaction or role that Omeprazole played stopped once it left his bloodstream, which is probably about 24 hours.  Therefore, the Lupus antibodies still in him were allowed to cause damage to his AV node.  If perhaps he would have remained on Omeprazole after his birth until all the antibodies were out of his system, would the CHB have returned?  That I don’t know.

Now this is all speculation and theory on my part and I am far from being an expert but it seems to make sense.  Presently, steroids offer limited effectiveness in certain stages of CHB and they have no effect in third degree.  So what's exciting is, if the use of Omeprazole proved to be successful in the treatment of third degree CHB, it could also open up a bigger window to treat CHB in general.  After all, Joshua showed steady improvement around week 35 after being diagnosed with third degree CHB at week 20.  Even more so, with further research it may be possible to give Omeprazole (or another Proton Pump Inhibitor - PPI) as a preventative measure to expectant mothers (pre-congenital heart block) who test positive for anti-Ro/SSA-positive antibodies.  However, with that being said, I am by no means suggesting that expectant mothers who presently have Lupus or have particular antibodies take Omeprazole, Prilosec OTC or the like in hopes of preventing or treating CHB in their unborn child.  In fact, do not begin any treatment without your doctor’s advice.  As always your doctor should be your main avenue for prevention and treatment. 

As I said before, I hoped that some research would be done in this area years ago but as of yet, I have not heard or seen any.  That is why I have created this website.  I hope that sharing the Joshua Effect with the world may spark someone’s interest to begin some research.  After all, it is not uncommon that a particular drug initially meant to treat one condition surprisingly leads to breakthroughs in treating other unrelated conditions.  This may be one of those times.

Thank you for visiting and reading Joshua’s story.  If you are here because you too have a loved one with the risk of CHB or you have just discovered they have CHB, our prayers are with you.  Please feel free to contact me at joshuaeffect@hotmail.com to share your thoughts and your story.  As always, listen to and trust your doctor but do not take what they say as the only answer.  Trust your instincts and do your own research.  Even if you find the answer you are looking for, do not stop researching until you have exhausted every possibility.

* As an important side note, we later found out that monthly prenatal visits are not enough for expectant mothers who have Lupus or who carry particular auto-immune antibodies.  Your doctor must follow a protocol with a high monitoring frequency.  Early detection and diagnosis of CHB with weekly fetal mechanical PR interval measurements using Doppler echocardiography is critical in order to treat CHB before it progresses to third degree.

Thank you again and God Bless.