The gist of the diagnosis is she is missing the part of the heart that pumps blood to the lungs where they pick up the oxygen. This is often called a single ventricle, though there are other diagnosis that fall under this category as well. Generally, single ventricles get a series of 3 surgeries, the Norwood, the Glenn, and the Fontan. After these surgeries, the deoxygenated blood will completely skip the heart and go straight to the lungs to be oxygenated and then head to the heart to be distributed throughout the body.
Quinn had the Norwood at one week old, where they combined the aorta and pulmonary artery, fixed the coarctation (narrowing) of the aorta, and added a shunt. The shunt is a tiny tube that allows the blood to travel from one vessel to another. This is what clotted and caused all kinds of problems that I will reference throughout my posts, in particular, the “Life is Meant to be Enjoyed” post.
She also had the Glenn where her shunt was removed and her superior vena cava (SVC) was connected to her pulmonary artery (PA). This allowed some blood to bypass her heart and go straight to the lungs.
In the third surgery, which she will never get, the inferior vena cava (IVC) would be connected to the PA as well. At that point, the new circuit would be complete and her body would function close to normal with that new anatomy, though, she would never be “fixed” as most people assume.
But like I said, that wasn’t the case for Quinn. For whatever reason (there are many theories), Quinn’s body didn’t like the Glenn physiology and she had another procedure. They nicknamed the procedure the “Turbo Glenn”. With a name like that, how could it not work, right? Well I won’t go into this one because it didn’t work.
Quinn received a third open heart surgery to bring her heart back to the Norwood physiology. She got a new and improved shunt back. I am fondly calling this one the Norwood 2.0. She has done surprisingly well with this anatomy and has gotten healthy enough to be listed for transplant.
She is currently listed as a 1A status where the average waiting time is about 3 months. I will update this post more when she receives her transplant.
Believe it or not, I actually typed all of this out without referencing any other documents or looking anything up. This is all ingrained into my brain at this point and it will never leave. I also only scratched the surface of what I have learned. When I think about how much I’ve learned in less than 5 months, I am amazed. My husband made the joke at rounds the other morning that he should be given a wheely computer too. I know, this will only make sense to some of you, but it was too funny not to include it. Sometimes we joke about how Quinn’s first words will be S and P waves, or ventilator, or emesis, which is vomit for those of you new to all of this medical stuff.
I am so happy that I have learned so much about the heart and other body systems so that I can continue educating others on the importance of research.
Knowledge is power.
If you are interested in looking into this further, here is a great video to check out.