We encounter risk everyday. Every single choice we make or action we take involves risk. There's risk of injury, emotional pain, embarrassment, and failure, to name a few. Still, we get up each day and walk, eat, drive, work, and put ourselves out there. We take and accept these risks for ourselves often without conscious thought. Other risks we only take after careful thought. The risk inherent in medical care is one such risk. Generally, however, so long as you trust your healthcare provider, this level of risk is generally acceptable. So it was with some surprise that I found that the same is not true when it comes to my child.
Lil' Bit's cardiologist recommended that she have a heart catheterization to measure the pressures in her heart to determine if her VSD needed to be closed. He also indicated that during the test they could look to see whether she had any segment of left pulmonary artery that they could work with to try and attach a stent, get blood flow to the left lung, and see if it would grow. Now, if my doctor told me I needed a heart cath, I would, without reservation, recognize that it is a common procedure and that the risks were outweighed by the benefits and have the test done. Having to agree that doctors could perform the test on my daughter was not as simple. It had the same risks and benefits--indeed, perhaps greater benefits in her case given her situation--and yet the risks seemed too high. As a parent, there are times that any risk seems too high. Fortunately, I recognized the irrationality and emotional basis of this position and overcame my reluctance to have her get the procedure.
And so it was that earlier this week, we took Lil' Bit to the "big city" to have a heart cath done. It was scary, but we managed to get through it. She did great and came out of the test none the worse for wear. However, the results weren't what we had hoped. The pressures in her heart need to be taken care of, so they want to schedule her for open heart surgery sometime before Thanksgiving. In addition, there is nothing left of the left pulmonary artery to work with. Her right lung is doing all of the oxygenation at this point--in fact it is larger than normal, where the left one is smaller than normal. The left lung isn't doing anything, which means that sometime down the road she will likely have to have it removed. More surgery. My heart breaks each time I have to think about Lil' Bit having to go under the knife at such a young age. I know that she is unlikely to remember any of this, which also means that she likely has no stress or anxiety leading up to the procedures (unlike her parents). It doesn't make things any easier.
It reminds me of my own fragility and makes me wonder whether I can put myself out there and risk heartbreak with another child. My only consolation is that we elected to wait to go through another round of IVF until we learned what Lil' Bit's prognosis was. Don't get me wrong, she has a great prognosis. They feel confident in the surgery and, given her body's shown ability to adapt and compensate, see no long term issues related to her missing left pulmonary artery except the chance that she won't have as much "reserve" as those two-lunged folks. Even with the good prognosis, however, I am fairly certain that I would not be handling all of this information nearly as well if I were hyped up on fertility or pregnancy hormones.
Ultimately, this week boils down to two simple facts. The surgeon should be able to fix Lil' Bit's broken heart, but mine will break in the process. Such is the nature and sacrifice of parenthood, I suppose, but I was wholly unprepared for it all the same.