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 went to the cardiologist wednesday. Not the news we had hoped for. It's one of the top 4 hospitals in america which does make me feel confident about the decision the drs made. We saw a cardiologist and the attending physician. We got the echo when we got there. Before we got it we talked to the attending and were told, most of the time with VSD they just wait and see but we have to be sure. So I was almost feeling upbeat and positive. Like yey no big deal! So we got back and were informed Rylan has Tetrology of Fallot. He will require open heart surgery between 3-6 months of age. If this isn't fixed it can cause major issues in the future. His tetrology is actually "mild" but any tetrology is not good. Basically there are 4 things wrong with his heart.

  • Pulmonary valve stenosis. This is a narrowing of the pulmonary valve, the flap that separates the right ventricle of the heart from the pulmonary artery, the main blood vessel leading to the lungs. Constriction of the pulmonary valve reduces blood flow to the lungs. The narrowing may also affect the muscle beneath the pulmonary valve.
  • Ventricular septal defect. This is a hole in the wall that separates the two lower chambers (ventricles) of the heart. The hole allows deoxygenated blood in the right ventricle — blood that has circulated through the body and is en route to the lungs to replenish its oxygen supply — to flow into the left ventricle and mix with oxygenated blood fresh from the lungs. Blood from the left ventricle also flows back to the right ventricle in an inefficient manner. This ability for blood to flow through the ventricular septal defect dilutes the supply of oxygenated blood to the body and eventually can weaken the heart.
  • Overriding aorta. Normally the aorta, the main artery leading out to the body, branches off the left ventricle. In tetralogy of Fallot, the aorta is shifted slightly to the right and lies directly above the ventricular septal defect. In this position the aorta receives blood from both the right and left ventricles, mixing the oxygen-poor blood from the right ventricle with the oxygen-rich blood from the left ventricle.
  • Right ventricular hypertrophy. When the heart's pumping action is overworked, it causes the muscular wall of the right ventricle to enlarge and thicken. Over time this may cause the heart to stiffen, become weak and eventually fail.

 

1 in 100,000 kids have this heart defect. My cousin actually has tetrology also which is insane. Hers isn't thought to be genetic. but 2 people in our family within 20 years to have it...hmm. Idk.

We are really overwhelmed. Trying to keep our heads up. It's so hard to imagine your baby going through this

 

 

 

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Comments:

Lb128f
Nov. 12, 2010 at 12:03 AM

I'm so sorry...this isn't the diagnosis I was praying for either. I am glad you feel confident in the hospital and the Doc's...amazing procedures can be done these days and I know they will do everything they can for Rylan. You all will be in my prayers. Please update when you can.

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