We will face a decision at some point about fixing our baby’s heart. For the few of you reading this that don’t follow me on Facebook, James is in the hospital due to severe congestive heart failure. It occurred much quicker than any of us – including his cardiologist and neonatologist – expected.
The answer to the surgery question is not yet clear to me, although I hope in the days that come, it will be.
I hear and have said the words, “he is my baby. He is not a diagnosis” many times. It is true. He is my child, my baby. I would give anything to save him, to heal him. Despite that, I know that he is ill with a life-limiting disease. I won’t use the term incompatible with life, because he is definitely full of life. Despite that, he has a serious disease that will take his life via some route.
The questions that I ask myself are these: if we did surgery, would it be for him or would it be because we needed to feel that we gave him every opportunity? If he didn’t survive surgery and come home, would I regret my decision? If we didn’t do surgery, and I had to watch him die of heart failure, would I regret that? What decision would make me feel like we honored James’ path – honored his life?
As a veterinarian, I frequently have to help people make similar decisions for their pets. Choose invasive surgery or medical treatment for an elderly or extremely ill pet or choose to not treat and allow death to happen? I often tell clients that I do not believe animals have a sense of time. They live in the moment – joy in the moment, pain in the moment. I fully believe this to be true. I cannot explain to a dog that the painful procedure that I am going to put him through will buy him some time, that the hospitalization with an IV catheter and fluids, and painful pokes with needles and prods by unfamiliar people will give him some time at home before his kidney failure kills him.
Similarly, I cannot explain to my son that if he endures the pain of having his chest cracked open, he may have some more time with us. I cannot explain to him that the pain is temporary, the separation from mommy and daddy is temporary, because he exists in the here and now, moment to moment. His concept of tomorrow doesn’t exist.
I cannot tell him that the surgery will be a success. And I cannot tell myself that. It may be. He has a good chance of coming through the actual surgery just fine. It’s the recovery that might not be great or survivable. There’s no way to know.
The heart surgery is just the start for him. Down the line, we may be dealing with tracheostomy tube placement, G-tube placement, spinal surgery. I will never be able to explain to him the reason that he is having these things done. I will never be able to explain that the pain is temporary and that there will be good days to come.
In talking with our doctor today (the head of the PACT team), he mentioned that he has questioned himself about what road he would go down with his own child in this circumstance. He admitted that he doesn’t know if he could do the many interventions – surgical and medical – if he was faced with this decision. I look at my son, and I can’t imagine not trying if I think it’s going to give him his best chance at life.
There’s just no way to know the best path.
We continue to let James lead us. His improvement today delighted his cardiologist, and he was very pro-surgery for James. He might have slightly mitigated the invasiveness of the surgery, but he did report that small babies heal great (although James may not heal as well as an otherwise healthy baby with a heart defect) and that he didn’t see a reason that James won’t do well.
I had to gently remind him of the greater picture – that James still has a systemic disease affecting most of the cells in his body, but his enthusiasm was at least temporarily infectious.
Who knows what tomorrow holds? James will tell us what he needs and what he wants. Right now, I think he is strong, he is fighting, and he isn’t in pain or discomfort other than the annoyance of CPAP. If that changes, we will have to re-evaluate our plan. As I am frequently reminded, it’s day by day with him. It’s enough to live in the moment, enjoy his presence, talk to him, and even laugh here and there (I laughed out loud today, and it felt so good, I kept doing it – I might be a tad emotionally unbalanced).