Joey's heart story

Updates are on Sherrie's Xanga blog- click on the Xanga icon!

This website tells the story of my son's treatment for a congenital heart defect known as subaortic stenosis. It is also sometimes called subvalvular aortic stenosis or a subaortic membrane. Subaortic stenosis occurs in 0.08% of the general population, and accounts for 1% of all congenital heart defects. This site is also intended to promote congenital heart defects awareness.

What is subaortic stenosis?

Basically, there is a tissue membrane growing below the aorta which limits the amount of blood that can enter. This limited space causes the blood to enter the aortic valve at an increased velocity, causing additional strain on the valve. If not treated early, this can result in the need for a replacement aortic valve and additional strain on the left ventricle. If you would like to read a medical explanation of SAS, click here

How is Joey being treated?

Joey was born December 4th, 1996 weighing a whopping 9 pounds 10 1/2 ounces. His heart murmur was detected at about 14 hours of age, but the subaortic stenosis wasn't diagnosed until he was almost two. Since then, he has been seen by his pediatric cardiologist Dr. Jorge Giroud every three to six months for an EKG and echocardiogram (an ultrasound of the heart). At his July 2001 appointment, it was discovered that his aortic valve had started to leak due to the turbulent force of the blood passing the subaortic membrane. As a result, he had open-heart surgery on September 13th 2001 at All Children's Hospital to remove the subaortic membrane. His surgeon was Dr. Jeffrey Jacobs.

Click here to read about my September 2001 surgery.

As of September 2002, the membrane appeared to be returning, as it does in 15% to 25% of cases. We have seen his cardiologist every three to six months since then, to monitor the growth of the membrane and the condition of his aortic valve. On January 20, 2006 Joey had a transesophogeal echo, which is an echo of the heart that is done through the esophogus while the patient is under anesthesia. It showed that the membrane was back and the aortic valve had a mild leak. His cardiologist, Jorge Giroud, suggested that we consult with Dr. Quintessenza ("Dr. Q") at All Children's Hospital and consider another surgery identical to the September 2001 surgery. We spoke with Dr Q on February 6, 2006 and he felt that the best option for Joey was to repeat the subaortic resection. However, he said that since Joey had grown quite a bit since his 2001 surgery, the outflow track below the aorta had also grown and there was less of a chance of the membrane returning after this second surgery. He said the chance was 5 to 10%, compared to the 25% that it was after the first surgery. The surgery took place at All Children's Hospital on May 18, 2006.

Click here to read about my May 2006 surgery.

We are now over two years out from that surgery, and Joey has continued to do very well. He had a checkup with his cardiologist in June 2008, and there was no sign of the membrane returning. He has mild leaking in his aortic valve, but is doing well enough that he doesn't have to go back to the cardiologist for 1 year! He is starting sixth grade this year, I can't believe he's in middle school already.

Pictures of Joey

Links with more information about congenital heart defects. Did you know that congenital heart defects are the MOST COMMON birth defect, occurring in one out of every 100 to 150 births?

The Children's Health Information Network: Congenital Heart Disease Information and Resources (PDHeart)

Kids With Heart

Joey's favorite things

Click here to view Joey's Amazon wishlist.

Click here to see Joey's panel for the CHD Awareness Quilt Project
This panel joins hundreds of others in a set of 18 quilts displayed nationwide representing children all over the United States effected by CHD's. Click on the logo to visit the CHD quilt homepage

Joey's virtual online quilt by Quilts of Love

Read Sherrie's blog "Joeys_Mom" on Xanga for the latest news on Joey

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This page was produced by Sherrie Williams (AKA Joey's Mom)

Comments? Click here to email me.

Last updated: 08/05/08

Graphics are used with permission from Special Heart Graphics

"God is the strength of my heart, he is mine forever!" Psalms 73:26 (LIV)