Cognitive Heart Defect Diagnosis

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”  

Jeremiah 29:11

Does anything in life ever go as planned? Eh, maybe a short list of a few things, definitely nothing about this pregnancy with Veya.  That’s why I am not completely sure why I was so shocked when I had to learn the lesson that Veya’s journey is on God’s Timing not ours at my 20 week anatomy scan. All of our lives are based on God’s Timing. It doesn’t matter how much we prepare, stress or worry because His will is to be done His way, yet we often forget that in life and we wander around thinking that we are in control.  And nothing else in my life has proved this more than our sweet Veya.  Her timing and God’s timing trumps anything I think I might have the slightest control over.  (and maybe this is just a prelude to my future with this feisty little warrior)

What I thought was just going to be, yet another routine and uneventful anatomy scan turned out to be quite the opposite of that – it was discovered that our daughter has a hole in her heart.  From here my care was transferred from my midwives to the Maternal Fetal Medicine Team at McMaster Children’s Hospital and they sent me off for a fetal echocardiogram with cardiology.  At 28 weeks I went for the echo and learned that our daughter’s heart was much more complex than just a singular hole but rather she had several structural issues with her heart.  She was diagnosed with Complete Atrioventricular Septal Defect. This is a heart defect affecting the valves between the heart’s upper and lower chambers and the walls between the chambers.  She has two holes in her heart.  One in the upper chamber and one in the lower chamber. This means her heart looks a lot different than yours or mine.  We have four chambers to our heart whereas Veya only has two.  Having just two means that the blood mixes between each side when it shouldn’t.  This means her heart will have to pump extra hard to get the blood to flow where it needs to go.  The cardiologist told us that she will need open heart surgery after she is born (about 3-6 months, depending on how long she can hold out for)

They also found that Veya has just one common atrioventricular valve in the center of her heart instead of two separate valves.  This will also need to be repaired.  They hope that it will be large enough to split it into two.  There were some other areas in question like her pulmonary veins not formed correctly, and the size of her left ventricle they thought was unbalanced (meaning smaller than her right ventricle) while I was pregnant with her, but this has since been ruled out. Praise God!  This was an answered prayer for us! (Especially because if there were issues with the pulmonary veins like obstructions, it would mean another conversation as to where I would be allowed to deliver her safely which would have been at Toronto Sick Kids.)

We were also informed that Veya will likely need medication at some point after she is born to help her until she can have surgery and a few weeks after birth…we would begin to see how hard it is be for her to breathe. (Which we are already seeing with her now that she is three weeks old) Also catching any illness will be harder for her. A simple bug that would normally last a day or two can take weeks for her to get over and could even be fatal for her. As her parents, of course we want to fix her heart! But we can’t. Thankfully, we know and serve the One who can.  Maybe God will heal her miraculously. Or maybe He’ll heal her through surgical intervention.

As you can imagine, all this information flew into my head swirling around, I will never forget the look on my cardiologist, it’s like she knew I was struggling to keep up…and then I was met with a gut-wrenching offer... “Due to your baby’s complex heart defect you qualify for a late termination.”  It was there that I BROKE.  Tears streaming down my face not because of the medical condition our daughter was facing but because I just watched her dance around on that screen the last two hours and they wanted me to consider ending her life? Why because of the potential health issues she might have?  Because to society she could be a hinderance? Her worth and value are not based on her medical condition.  Her worth and value comes from her Creator, and He has created her this way for a special purpose.  Her future will hold something far beyond what I could ever imagine; I’m sure of it. This little girl is more than deserving to live out her purpose for Him…and what a blessing it will be as her parents to be able to witness to it as she grows!