Crash Course on the Aortic Valve

May 23, 2012- We  met with Dr. Ohmstede, the Pediatric Cardiologist and had an extensive Echocardiogram done on Baby Boy. It really is amazing at what they can see/diagnose while the baby is still in utero. He literally looked at every possible artery, angle and heart beat for at least 45 minutes. Lots of "shop talk" going on between him and the ultrasound tech - when they were finished, we received what is as close as I think we are going to get to a diagnosis- until he is actually born. Without going into the full blown diagram of the heart that he drew, I am just going to give you the names of the conditions. The terminology is overwhelming to say the least.

1- Bicuspid Aortic Valve Disease - the aortic artery is the largest artery in the body and pumps blood to the ENTIRE body. Normal valves (the opening to this artery) are tricuspid - or have 3 little flaps that open and close. Baby Boy's has only 2 little flaps. Bicuspid aortic valves are the most common cardiac valvular anomaly (defect), occurring in 1- 2% of the general population. It is twice as common in males as in females.

2- Aortic Stenosis  - In aortic stenosis, the aortic valve does not open fully (b/c the bicuspid valve). This decreases blood flow from the heart.

3- Aortic Coarctation - Aortic coarctation is a narrowing of part of the aorta. It is basically where the arched part of this artery is narrow (we won't know just how narrow until he is actually born) and blood has a hard time passing through efficiently.

These are the things that they could see. Essentially, we will not know 100% until he is born. He will go straight to the NICU at birth and be put on this medicine called Prostaglandin to keep his heart basically functioning like it does in utero so that they can do an ultrasound (echocardiogram) on him. At that point, we will know for sure what we are dealing with.

Dr. Ohmstede did recommend that we deliver at CMC Main in uptown Charlotte which is actually attached to Levine Children's Hospital (about 25 minutes from our house). This way, we are right where all of the experts are and will not have to transport him. He also suggested that Jason, Lacie and I all have echocardiograms to see if we have a bicuspid valve as well. Apparently, recent studies have shown that it can be hereditary.

June 6, 2012 - Jason and I both had our echocardiograms and we both have a normal tricuspid aortic valve and no other issues! Lacie Rae will have hers on July 20.

June 8, 2012- We had a consultation with Dr. Peeler & Dr. Maxey - the 2 Pediatric Cardiac Surgeons at Levine's. http://www.levinechildrenshospital.org/body.cfm?id=130&oTopID=43

Jason and I were so impressed with how personable & respectful they were. They immediately helped us to feel welcomed, relaxed and most importantly, ready to listen fully and understand.

In a nutshell, there are 4-5 "most likely" procedures that will be done after he is born. Which of (or what combination of) these is done will be determined at birth after the initial ultrasound/echo. The neonatologist and cardiologist will present what they find to the surgeons, they will develop a plan and then come to us. They will not do surgery until at least Day 3 of his life to give his lungs time to fully open up and get going.

The possible procedures range from "simply" inserting a balloon to open up the aortic valve to a full on open his chest heart surgery. We are looking at a 2 week to a month + long NICU stay after as well depending on what the outcome is.

We honestly have full confidence in Dr. Peeler & Maxey. We've done our research on them and feel like we are right where we need to be in terms of having access to the best pediatric cardiologists and surgeons. Also - at Levine's, they have a Cardiovascular Intensive Care Unit specifically designed for babies/children in BB's situation.

Because we have to deliver at CMC Main, I had to switch OB's so I have my 1st appointment with my new Dr on June 20. Baby Boy will then have another echocardiogram on July 20. They do not expect much change but there is a possibility that they could see something more (or less) than before - still not expecting a full diagnosis at that point though.

I know this is SO MUCH information and probably much, much more than you wanted to hear but now that we are all up to speed, hopefully my posts after this will be quite a bit shorter and less overwhelming.