Getting to the Cor issue

(showing me his dirty hands and face after a chip extravaganza)

Ryan has something call a cor triatriatus membrane in his heart. In layman's terms, he has a flap of 'skin' that sits over the mitral valve (in the left atrium). When flaccid, it allows blood to go through. Some people have cor membranes their entire lives without symptoms. For others, the membrane starts to grow rigid and restricts blood flow through the mitral valve. The cor continues to grow in rigidity eventually closing off the blood flow completely. The normal course of action is to perform open-heart surgery and cut the membrane out.

Ryan's cor membrane grew to an emergent level when he was 2 months old in April 2009. Because he was so unstable and because the team didn't want to cut through the skin-like membrane over his heart (pre-chest repair), they decided to try to balloon open the membrane in the cath lab to eliminate the need for surgery.

We knew it was a temporary fix. The cor membrane would surely grow rigid again. We just didn't know how much time we had.

On March 5, Ryan had an ECHO to see why he was so cyanotic (blue). The report showed Ryan's cor membrane was measuring a rigidity of 12. It was 2 in April 09 after the life-saving cath. I asked the cardiologist what number would mean emergency surgery. He didn't have a clear answer, but said they didn't want it getting to 20. Everyone in Pittsburgh and DC agreed we needed a heart catheterization to accurately assess the situation.

We were in the cath lab with Dr. Kanter (an Intervention Cardiologist) by that Friday. During Friday's heart cath Dr. Kanter was able to perforate and pop the membrane once again - something we weren't sure would be possible since over time the membrane gets thicker and harder to deal with. He was able to get the rigidity back down to 2, a truly amazing feat.

This time we don't want to wait for the membrane to grow again. Ryan was sicker than we thought going into the cath lab.... and wouldn't be stable enough for surgery.

We all agree it's time to cut the membrane out. Ryan is stable and the membrane is the lowest it's going to be. With that being said, Henry and I will be back in DC with our Little Boy Blue on Friday, April 27 for open-heart surgery.

Although surgery is something I advocated for after getting the results of the cath, when I got Dr. Donofrio's email stating to schedule something within 4-6 weeks I nearly choked on my heart. Tears sprang into my eyes as I thought of sending my stable, well-looking, happy little boy into open-heart surgery. But it must be done. Now is the time. The pressures in his lungs are as good as they're going to get and it's now he'll best be able to tolerate such an extensive procedure before the membrane starts growing again.

We went for an ECHO this week and will get another one in three weeks to reassure us the membrane is inactive until the surgery. Should it start growing we will push the surgery forward to give Ryan the best chance of recovery. Please keep us in your prayers as we face yet another bump in our road.