This News Hurt...

Hi Everyone,

Amy and I wanted to give you an update after our appointment with the pediatric cardiologist in Peoria today. I've been trying to find the right words that would allow me to spin this in some sort of positive light, but I'm sad to say that those words are escaping me at the moment so I'll just get right to the details. I'm sorry this email is so long. I tried to write it without all of the medical details, but it felt like I was leaving out too much. I also want to apologize to anyone with a medical background because I may get a few a these things mixed up.

In reading this it may be helpful to know that the human heart has 4 chambers. The left and right atrium are on top. The left and right ventricle are on the bottom. Blood is normally flows through valves from atrium to ventricle.

We went into our appointment with a preliminary diagnosis of Hypoplastic Right Ventricle which was thought to be due to pulmonary atresia (valve between right ventricle and pulmonary artery didn't form properly). We've been holding out hope that the ventricle was simply deflated because of the pulmonary atresia, but could be opened by using a balloon to dilate the valve. Today, a fetal echocardiogram (echo) confirmed that our baby does have the hypoplastic right ventricle. Unfortunately, the echo showed that he actually has Tricuspid Atresia which in his case means the valve that would normally control blood flow from the right atrium to the right ventricle simply did not form at all. The echo also showed that he has an Atrial Septal Defect (hole between the 2 upper heart chambers) and a Ventricular Septal Defect (hole between the 2 lower heart chambers). In this case the 2 septal defects are actually a good thing because when he's born they will allow at least some oxygenated blood to flow through his body.

Our biggest surprise was that the echo also showed that he has another heart condition called Transposition of the Great Arteries. The "great arteries" are the pulmonary artery and the aorta. Normally, the pulmonary artery is connected to the heart's lower-right chamber (the right ventricle) which pumps oxygen-poor blood into the pulmonary artery, which carries blood into the lungs. The lower-left chamber (the left ventricle) pumps oxygen-rich blood into the aorta, which carries that blood to the rest of the body. In our baby's case, the normal position of the arteries is reversed. The aorta comes out of the right ventricle and the pulmonary artery comes out of the left ventricle.

The problem with this set-up is that oxygen-rich blood returns to the lungs while oxygen-poor blood gets carried to the rest of his body. So, the only way for oxygen-rich blood to reach his body is through the atrial septal defect (hole that allows blood to flow blood between the 2 upper chambers) and the Ventricular Septal Defect (hole that allows blood to flow between the 2 lower chambers).

In summary, shortly after he's born he will need open heart surgery involving 2 steps. One will add a shunt that will allow the blood to bypass the right ventricle and still pass through his lungs to pick up oxygen, the other (called the Damus-Kaye-Stansel procedure) will address the Transposition of the Arteries. Then, at 4-6 months he will have a second open heart surgery (called the Glenn shunt procedure) and a 3rd at 2-4 years old (called Fontan procedure). The 2nd and 3rd surgeries are the additional steps required to allow his heart to function without his right ventricle.

We are obviously sad, scared, confused and frustrated by this and are taking the very news hard. Please continue to pray for our family.

Thanks, Craig & Amy