Andrew Mailer

First post: Jul 23, 2016 Latest post: Sep 23, 2021
Welcome to Andrew's CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.

Andrew was born with several complex heart issues that were detected when he was just seven days old; his first heart surgery was when he was eight days old.  At that time we knew that he had a coarctation of the aorta, a bicupsid aortic valve, a mitral valve prolapse and multiple VSDs.  

They repaired his coarctation during his first surgery stating doing more would be too much for his heart and body to handle.  Over the next several years there were multiple tests, procedures, and office visits.  Some were filled with great news, many with hard and complicated findings, several with new items that popped up that we were not expecting. 

At nine Andrew had his second major surgery to replace his aortic valve.  While the days leading up to the surgery were stressful, the procedure and day went well.  Andrew, in true Andrew form was amazing, strong and incredibly brave.  He tackled the tasks head on to help him recover quickly.  At that time, we chose to have a prosthetic valve placed instead of a mechanical valve. Doing this allowed him to continue with sports and normal activities like any other kid.  There was no blood thinners, no additional restrictions  and the same recovery time.  The trade-offf to this was the valve would not last more than 5-7 years.  This July would be his five year anniversary.

Yesterday was Andrew's routine visit.  We knew that there was something going on as he has had periods of light-headedness, and more out of breath than normal when doing activities.  He had a cough over the past week that we thought was a spring cold or allergy drainage as he didn't otherwise seem bothered by it. We had a holter monitor over Easter weekend so it could track what was going on but the results did not come back before his appointment.  Truly we thought that we would be told we needed to come in more frequently, or maybe a stent would be needed but the news we received completely shocked all f us.

During the echo the tech stepped out to alert his team and a few minutes after she returned a group of doctors came in to review and ask questions.  We learned that Andrew's prosthetic valve was no longer functioning- she used the word fused.  They look at ejection rates and would accept anything 50 and higher.  Andrew's is at 25, meaning his heart is working at 50% capacity and the faulty valve is impacting his entire heart health. In addition we learned that Andrew's cough was due to his heart struggling and not the spring cold we dismissed it as.

Andrew was sent straight to the ICU for blood thinners and more tests; he will remain here until a plan is created for a valve replacement.  There are two options for replacement.  One would be to go through another open heart and replace his valve with a mechanical or a new prosthetic. The other option would be for them to go through the groin with a catheter and feed up a a new valve that would be placed in the old one.  Ideally, we would like to have this done via cath, doing so would eliminate bypass and another chest opening. It would be another prosthetic valve which would mean he would still need a replacement in 5-7 years but this would give his heart time to recover from the strain it has taken on and it would also mean going home and being a normal person in a very short amount of time.  There are several doctors debating the pros and cons of each.  Until a decision is made, we wait. 

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