"Just the facts, ma'am"

After having met with the cardiologist at Vanderbilt today, here is what we know about Ayden and his condition (disclaimer - I'm doing this recitation pretty much from memory, so I may be off on a few of the non-numerical specifics):

• He indeed has hypoplastic left heart syndrome (HLHS). More specifically, he has only one "pump" in his heart, whereas the rest of us have two. He is missing the pump that sends blood to his body after it has been oxygenated. HLHS also results in an underdeveloped aorta, which is the artery that sends the blood to the body.
• Ayden can survive in this state in the womb, but not in the world. Without treatment, he would die very quickly.
• Initially, medication will keep him alive. This medication keeps open an arterial bridge (my term) - the patent ductus arteriosus - which would normally close up after birth, and which is helping keep Ayden alive. This is merely a stop gap measure.
• In order to survive, three separate surgeries are necessary, which encompass two procedures (the second procedure is done over the course of two surgeries).
• The first surgery, the Norwood procedure (I hate linking to Wikipedia, but at a glance, it seems consistent with what the doctor told us), is the big hurdle. This will be done within days of Ayden being born. The procedure essentially combines his aorta with the pulmonary artery (which sends blood into the lungs and is connected to his one good pump), allowing his single pump to do double duty. A shunt is also put in to provide a pathway to the lungs.
• 20% of children born with HLHS do not survive the surgery.
• The second surgery - the first of two that combine to make up the Fontan procedure - will occur 3-6 months after birth. Another 20% of children born with HLHS will not survive this 3-6 month period.
• The third surgery will occur around the two year mark.
• The Fontan procedure has a very low mortality rate - somewhere around 5%.
• These final two surgeries reconfigure Ayden's heart. I'm a little unclear about this, but I think the end result is that Ayden's one pump will be used to send blood to the body, while blood that is returning to the heart from the body (and which needs to go to the lungs) will effectively bypass the heart and go straight to the pulmonary artery.
• After these surgeries, Ayden will need very regular check ups with the cardiologist.
• Obviously, he will be at a higher risk to develop heart-related issues.
• A heart transplant is also an option, but it is a secondary option to the surgeries.
• Even if the amnio results (which we have not yet received) come back negative, that will only eliminate the major issues (e.g., Down syndrome). It is still possible that Ayden will have other, less serious developmental problems (e.g., ADHD).
• The long term prognosis/life expectancy is unknown. While the Fontan procedure has been around for 40 or so years, the Norwood procedure was only developed in the 80s. The children who have survived the whole ordeal are only now in their late 20s, at most.
  

I've skipped some of the smaller details, but that's the gist of it all. Needless to say, it's an uphill battle. The very real possibility that I will only spend a matter of days with my son is a hard pill to swallow. But, I am confident that we have a hospital and a team of doctors that will fight for him as if he was their own son. There is some comfort in that. Not enough, but some.

Right now, some is good.