What does DILV mean?

My son was diagnosed with Double Inlet Left Ventricle, which is a complex congenital heart defect. Congenital means that it was present at birth.  With this defect, the Pulmonary Artery, usually connected to the Right Ventricle, and the Aorta, usually connected to the Left Ventricle, are switched.  The Right Ventricle either never developed or developed so minimally that it is not a functioning chamber. In my son’s heart both the Mitral valve and the Tricuspid valves allow blood flow from the Left and Right Atriums, respectively, into the functioning Left Ventricle. In a healthy heart, those valves would allow blood flow strictly from Left Atrium to Left Ventricle and Right Atrium to Right Ventricle.  He has an ASD and a VSD.  That stands for Atrial Septial Defect and Ventricular Septial Defect.  These defects freely allow blood flow between the right and left sides of the heart. This means that rather than having two separate pumping chambers, one of which pumps blood to the lungs and one pumps blood to the body, instead there is one large chamber in which all the blood is pumped.

This is a medical description of what my son's heart looks like.
This is a medical description of what my son’s heart looks like.

In a healthy heart the blood that is pumped to the body is full of oxygen and the blood pumped to the lungs has depeleted its oxygen. All the blood being pumped to be used by the body is oxygen rich and gives the muscles and tissue what it needs to continue growing.  In my son’s body, all the oxygen rich and oxygen poor blood goes into the same chamber, mixes around and then gets pumped back out.  The blood going to his body may or may not have received the oxygen needed from his lungs.  The blood going to his lungs may or may not have made a trip through the body to deplete its oxygen.

This is a medical description of what a healthy heart looks like.
This is a medical description of what a healthy heart looks like.

On a day to day basis this causes small but noticeable changes in his body.  His fingers, toes and lips are often tinged blue/purple.  When he gets cold he has a very hard time warming up.  During the fall/winter months we have to leave a space heater next to his bed and then bundle him up before he ever leaves his room to help him retain his own body heat. Another effect of this defect is that he can get sick and stay sick easily.  He always has a cough, which is often from a lack of oxygen just as much as from being sick.  And he is very small for his age. He struggles to gain weight because his body has to work overtime just to keep him doing his normal daily tasks.

Other than those daily issues, this defect will not drastically change his life. He is still incredibly smart and he will be able to get all the schooling he wants. He can run and play with his friends and siblings until his body tells him to slow down.  As of right now, the doctors don’t even think his life expectancy is going to suffer.  He can get married and have children and be a contributor to all that is good in the world.

3 thoughts on “What does DILV mean?

  1. May your son stay happy and blessed. How old is he now and did he gone through any surgeries..If yes what was his age that time. We want know as one son is DILV


    • My son (2 yrs old) just completed his third surgery this week. I’ll post more about it later, when we get home and settled. I’m sorry to hear that your son is dealing with the same heart defect! But have hope! We’ve met so many amazing, helpful people, and we have managed to deal with the heart issues well. I’m sure things will fall into place for you too!


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