Nathaniel's Crusade

This is Nathaniel our "Tough Cookie" he is 11 and was born with Aortic Stenosis. 

Aortic valve stenosis — or aortic stenosis — occurs when the heart's aortic valve narrows. This narrowing prevents the valve from opening fully, which reduces or blocks blood flow from your heart into the main artery to your body (aorta) and onward to the rest of your body.

When the blood flow through the aortic valve is reduced or blocked, your heart needs to work harder to pump blood to your body. Eventually, this extra work limits the amount of blood it can pump, and this can cause symptoms as well as possibly weaken your heart muscle.

We spent a good part of three months after he was born at St. Joseph's Children's hospital in Tampa waiting for him to be strong enough for surgery. We opted for balloon valvuloplasty.  A valvuloplasty, also known as balloon valvuloplasty or balloon valvotomy, is a procedure to repair a heart valve that has a narrowed opening. It was successful and we have been blessed enough to go the past 11 years with close monitoring of the leak that the valvuloplasty caused. We have had a few scares along the way but have always been fortunate enough to get him back up and going again without surgery. 

Now after about a year of going to the cardiologist every two months the leak has grown to moderate/severe and surgery was recommended. I have spent the last eleven years watching and monitoring all the new surgeries and advancements that the medical field has made in this area and after heavy research and consulting with a few Dr.'s we have decide on the Ross Procedure for Nathaniel. 

The Ross procedure is usually performed on patients younger than ages 40 to 50 who want to avoid taking long-term anticoagulant medications after surgery. During this procedure, the patient's own pulmonary valve is removed and used to replace the diseased aortic valve. The pulmonary valve is then replaced with a pulmonary homograft, or donor valve.

The Ross procedure eliminates the need for Lifetime Anticoagulation (Warfarin), in studies it shows better freedom from long term chances of stroke and major hemorrhage. However despite these better long term outcomes it is under a lot of criticism as they are taking a single valve issue and making it a multi valve issue. Although, with that in mind, the aortic valve is the one with the highest amount of pressure and the pulmonary valve does not have as much on it. 

On top of that, the donor valves tend to wear out faster and the procedure to replace the pulmonary valve is easier and less invasive if there is a need for re-surgery. So both surgeries, comparatively, run the risk for the need for re-surgery but with the donor valve in the pulmonary spot it gives him a better possibility for a much smoother reoperation than if they had to replace the aorta valve.

Fun Fact – they state that you can actually hear the mechanical valve if they use that – which decreases the quality of life due to sound and having to take medication that causes so many complications for life. Which is another reason why we are shying away from regular mechanical aortic valve replacement. 

So this is the story of our tough cookie's journey preparing, going through and recovering from open heart surgery. His surgery is set for October 9th, 2017. 

Feel free to post comments and well wishes or share anything you think would be helpful, inspirational, or really anything that would bring a smile to Nathaniel's face as we go through this stage in his life or just feel free to follow us along the way. We love you all and thank you for all your support and love!

Donations ()

  • Sheryl Meyer 
    • $50 
    • 27 mos
  • Michael Mugge 
    • $25 
    • 28 mos
  • Morgan Beam 
    • $25 
    • 29 mos
  • Katherine Crabbe 
    • $100 
    • 29 mos
  • Kaori Osawa 
    • $20 
    • 29 mos
See all

Organizer

Carrie Bargas 
Organizer
Titusville, FL
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