And then came the diagnosis!

At my first well visit appointment (I was 2 months old) they heard a little heart murmur and sent us to see a pediatric cardiologist at Children’s Hospital a few days later.

So, on March 29th 2016, we all, my parents, brothers and I, took a long taxi ride to the cardiology unit downtown. They did many tests on my little heart, first an EKG, then an echo and also the usual routine listening with a stetoscope… in and out of rooms we went, doctor after doctor. And then the waiting started, 30mins passed, 60mins, 90mins and then mama got worried… Everybody else had gone back in and left. We were the only ones still waiting. Something was up. That’s when we knew it wasn’t just a small functional heart murmur like my brother Sam has. Cardiologist finally came back to get mama and I and sat us down for some explanations.

Turns out I have 3 seperate issues with my heart:

  1. BAVD
  2. PDA
  3. VSD

Now you’re all like HUH right? Let me explain what those are…

Bicuspid Aortic Valve Disease (BAVD)


A normal heart’s aortic valve opens into 3 seperate sections/leaflets. Mine, on the other hand, has two of those fused together… It narrows quite a bit the blood flow to the rest of my body. As a result, my heart needs to work twice as hard to get the blood out of that narrow opening. Eventually this can cause a lot of strain on my new little body and create other issues such as stenosis, enlargement and/or leakage. My heart is already a bit enlarged, so we need to keep an eye on that and they will fix if needed, through surgery. What does BAVD do to me, you ask? Well, I’m constantly tired, I’m out of breath easily, even doing simple things like feeding and playing with baby toys and I cough when I’m laying down and at night.

Patent Ductus Arteriosus (PDA)


Usually soon after a baby is born, the DA closes. But mine is still open (Patent means open) and means that my aorta and pulmonary artery are still connected, making the blue oxygenated blood from my aorta mix with the de-oxygenated PA red blood. It is increasing blood pressure in my lung arteries, essentially making me breathe faster, have poor feeding habits (low weight gain, become sweaty, and trouble taking in full feeds), have a fast pulse and tire easily also. It also sometimes makes my skin look very pale and bluish from lack of proper oxygen. My mommy doesn’t like that… If it doesn’t close soon, they will need to go insert a coil on it to close it up.

Talking about weight gain issues, I am a small baby. I was born in the 42nd centile, but as the weeks went by, I went down lower and lower, until finally reaching the 1% weight curve last week. I have a doctor appointment in the next few days and I guess this will be something to discuss with her.

Ventricular Septal Defect (VSD)


So there’s this hole between the right and left side of my heart ventricules. It is small enough to not really cause me many issues, but it is still there and if it does not close on its own, they will close it during the BAV surgery if needed…

I think that covers it all for now. If you have any questions, just click that COMMENT button and my mommy will do all she can to answer you.

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