Two Fridays ago (6/8) my wife and I got an ultrasound of our second child to determine gender. The good news was that it was a boy, and that his name will be Justin. The bad news is that they noticed a significant congenital heart defect. The rest of Friday, as well as the next couple of days, were mostly emotional recuperation for my wife and me. It was last Tuesday (6/11) that we were able to get an ultrasound with a cardiologist for an actual prognosis.
So I am writing this post for two reasons. First, I would like to ask you for your prayers. And I don't mean simply "I hope everything is OK" kind of prayer. I believe things can change with prayer, and that an outcome can be altered, or even a miracle can occur. These are the kinds of prayers that I am asking for. Please pray that Justin's heart is healed, and that no surgeries would be necessary.
The second reason I am writing this is to better understand what is going on. It helps me to understand something if I explain it. So the rest of this post is an explanation of exactly what is wrong with Justin's heart. I hope that this will also help in focusing your prayers in terms of what needs to be healed.
What Is Going On
Heterotaxy is a condition where the organs in the body aren't where they are supposed to be. For Justin, this relates both to his heart and to his stomach, which are located on the wrong side of his body. As of right now this poses no immediate threat, though it is possible that the stomach might get twisted as he develops. As of right now though, this is a minor issue and does not require treatment.
The Heart Problems
The biggest issue is Justin's ventricular septum, which is practically not there. The diagram below shows a normal heart:
The top two chambers of the heart are called the atria. The ventricles are the two lower chambers as labeled above. Deoxygenated blood (blue arrows) from the body flows into the right atria, is pumped into the right ventricle, and then pumped to the lungs through the pulmonary artery to receive oxygen. Oxygenated blood from the lungs flows into the left atria, then pumped into the left ventricle, and then pumped into the aorta to the rest of the body. Between the two sides of the heart, separating the deoxygenated blood from the oxygenated blood is the septa: the atrical septum and the ventricular septum.
Now this is Justin's heart:
The most obvious difference is that the ventricular septum is barely there at all. The two ventricles are essentially one large chamber where both deoxygenated blood and oxygenated blood are pumped into. Therefore, there is blood which already has oxygen being sent to the lungs, and only 50% of the blood going to the body has any oxygen (which is the bigger problem). While the heart still works, it is horribly inefficient.
While that is the biggest problem, it is not the only problem. If you look at the normal heart diagram, the two great arteries (the aorta and the pulmonary artery) are crossed. In Justin's heart they are parallel. This is called transposition of the great arteries, which is a fairly apt name for it. Ironically, given this transposition, he actually needs to have his blood mixed, or else the blood coming from the lungs would only go back to the lungs, and the blood coming from the body would only go back to the body. Additionally, with the septum (the wall between the two halves of his heart) not there, this problem is moot.
The third problem is that the valves going to the great arteries are only one valve. This means that if his septum was intact, the blood would mix anyway. So again, this issue is moot given the problem with the septum.
The fourth problem is the location of the septum, or the septum nub in this case. Justin is still growing, so even though the septum isn't forming, it still could (unlikely, but scientifically possible). However, it is too far to the right. Therefore the right ventricle is smaller than it should be. If the septum never develops, this also is moot. If it does though, it may make the ventricle too small to be operative, or, even if it is operative, it may become too small given operations.
Another thing, which I don't show in the diagram, is the doctor thinks he might have pulmonary stenosis, where the pulmonary artery (the one going to the lungs) is narrowed. However, she is unsure of this, so we'll see. Also, since she is unsure of this, that also means that if it is a problem, it is relatively minor.
There are two possible solutions to this problem. The first is surgery.
The most likely scenario, which is also the worst scenario, is that the ventricular septum (that wall dividing the right and left sides) never develops. If that occurs, then there will be a series of three surgeries. The first surgery will be a couple of days or a couple of months after he is born, depending on the severity of his condition. The next two will be, if I remember correctly, when he is five of six years old. The goal of these surgeries will be to separate the heart from the pulimonary artery (the artery from the heart to the lungs) and the venae cavae (the veins running from the body into the heart). The will somehow connect the venae cavae to the lungs.
In essence, they would be removing the need for the right side of the heart so that the whole heart will only be pumping blood from the lungs to the body. The bright side is that there will be no mixing of blood. The negative side is that he would functionally have only half a heart. That said, if all goes well, he still should have a relatively normal life. He wouldn't be a professional athlete or be able to join the military, but the doctor believes he still should be able to run around and even play picnic sports like an average person.
There is another scenario for surgery though. If his ventricular septum does develop, then they could surgically make his heart whole. All of those problems which I said were moot given the septal defect suddenly become the problem, but they might be solved in one surgery: swap the arteries and split the on ventricular valve into two. Now, if the right ventricle is too small, or if the pulmonary artery is too narrow, then they will have to go back to plan one anyway.
This brings us to the second possible solution to the problem: prayer. In my mind, this is the more important one. I believe that God can still perform miracles. The comforts of our society make it difficult for us as a church to live out the faith necessary to see them commonly, but He hasn't changed. God still works in mysterious ways but He could heal him.
So I am asking you all to please pray. Additionally I believe that specificity in prayer helps. So please pray for the healing of Justin's septum. Pray for the healing of Justin's arteries. Pray for the healing of the valves as well. And pray for faith for my wife and me. We have a hard road to travel, but I believe God will be there through it all.