Subaortic Stenosis and Ben Lake

A story about Ben Lake’s heart

3 years ago, Ben had open-heart surgery to remove what is called a subaortic membrane (a few cells in his heart have gone haywire and are multiplying causing a speed bump inside his heart)  which was causing a stenosis or narrowing of the vessel walls that lead to his aortic valve as shown in the middle diagram (with Ben’s first surgery the membrane had encircled the heart wall below the aortic valve and had attached itself to the mitral valve).  The end result of that surgery can be see in the last diagram labeled # 2 (the entire membrane was removed along with a small part of the heart wall in order to remove the heart cells that went wild). We thought we had resolved the issue knowing that there was a small percentage that it could return.  Yesterday we learned that it has begun to grow back and the news is painful to absorb.  The good news is that its growth is slow and it may not require any action at all.  The doctor says that the membrane may suddenly stop growing or it could continue to grow which would require another open-heart surgery.  We are in a holding pattern which will require a visit to the cardiologist in 6 months.   Ben will show no outward symptoms and he will not be limited in anyway because of this.

Here is what we need from you as friends and congregational members . . .  your prayers and your discretion of the matter around our children.  In time Ben will be able to handle more information as we learn about it, but there is no need to create any further stress for Ben or my other children as we begin to understand what exactly we are facing. The simple fact is that we just don’t know what the long term ramifications are going to be.  I promise that as we learn more we will certainly share with you so that we can journey together through this.  I will not be discussing this at church or worship, but privatly please feel free to ask what ever you would like to know.

Pastor Chris and Katherine Lake

Diagrams are from

Children’s Hospital of Wisconsin

Subaortic Stenosis

Blogged with the Flock Browser

About pastorlake

I am a pastor and self proclaimed Lutheran Geek. I serve Tree of Life Lutheran Church.

Posted on February 3, 2009, in ideas, thoughts and pictures and tagged , , . Bookmark the permalink. 10 Comments.

  1. We went through the first surgery with you and we will be there for anything yet to come. You have never left our thought and prayers but tonite they seemed even more sincere. With support, love, prayers and long distant hugs …the Schmidts–Ron, Jill, Alexis and Erin

  2. We will keep you all in our prayers. That had to be very tough news to hear. Hugs to all of you.

  3. Stephanie and Chad

    We understand How you feel Our 2 year old had the same surgery on April29th 2009. And At his follow up in August we were told it has all ready started growing back in September we were told we are looking at 6 months before another surgery because his is growing so rapidly. We will keep you and your family in our prayers please pray for ours as well

  4. Consider it a done deal. What is your son’s name? My church has a prayer chain that I would like to place him on if you would be willing.

    Take good care and keep in touch –

    Chris Lake

  5. Stephanie and Chad

    Our son name is Sky

  6. I continue to pray for Ben and you, Katherine, Maddie, and Ainsley. Sharon

  7. Thank you Sharon. We will keep folks updated as things develop.

  8. How is Sky?

  9. stephanie marion

    hi, my daughter has had this surgery as well and just like the pic 2 they removed and now it has grown back like the other picture. i have a few questions about your son and his surgeries and how he is doing if u could please email me/

  1. Pingback: Comment on Subaortic Stenosis and Ben Lake by jill schmidt « PASTORLAKE.COM

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