My husband and I have always considered communication to be the strongest asset in our marriage. Like anyone, we disagree and have spats, but without fail we consistently are able to meet back in the middle and work things out. I don’t think that either of us ever anticipated that we’d have to endure conversations regarding the end of life for one of our children. But here we are. We’ve spent countless hours just talking about all of the options. I feel so lucky that we share so many of the same fundamental beliefs and views, especially in a time like this. It’s part of why our marriage is so strong and why we make such a great team.
So our options, after the first echocardiogram, were: termination of pregnancy, surgery, possible heart transplant, or palliative/hospice. Yesterday, I had a second echocardiogram. Not much had changed, except that the aortic valve was now leaking, an indication that baby’s heart is getting tired. Now, the options are: heart transplant, or palliative/hospice. Of course, there is a very strong possibility that baby boy won’t survive until term. As he grows, and the demand on his heart grows, he is at risk for sudden cardiac death. His right ventricle is supplying all of the cardiac output, and with the aortic valve now leaking, it’s difficult to say how much longer the right side of his heart will be able to sustain 100% of the function. The efficiency of his heart should be about 29%, and he is functioning at 20%, which the cardiologist says isn’t terrible per say, but it’s also not great news either. Our only option, she says, is listing baby immediately upon birth for heart transplant.
So option 1: Baby is born. He is immediately brought to CVICU where he is put on medication called prostaglandin to keep the ductus arteriosis open. He would be listed for a heart transplant immediately. He may require something called ECMO (extracorporeal membrane oxygenation) similar to heart-lung bypass machine until a heart became available. Which could be months. Maybe longer. A few things we had to consider regarding this option, though. 1. If he was born with a completely not working left ventricle, how long would his body (namely: brain) go without oxygen? What are the longterm effects of this (rhetorical question). Would he even survive long enough to initiate ECMO and prostaglandin? Would he live long enough to receive a heart? Remember, another baby who is a perfect match needs to die in order for him to receive a heart. Hundreds die waiting. A handful of infants a year receive one. If he did receive a heart transplant, and survived, would his body reject the new heart? It’s not uncommon for these kiddos to be on 10-12 different medications not only to keep the body from rejecting it, but to ensure the heart is functioning appropriately. What precautions would we have to take, since he would be immunosuppressed from the transplant medications? How would we care for our other two children and be the best parents we can be to them, while simultaneously trying to juggle what is best for our incredibly medically fragile child. Would our son even be able to go to school, kids are like tiny germ incubators. A cold could kill our baby. What would his quality of life be? Would there be longterm effects from his time waiting for the transplant? Would he be able to do all the things “normal” kids do? And the most important question of all: Do we want to put our baby through all of that? If he dies attached to machines, intubated, somewhere that isn’t in our arms, would we wish we had made a different choice?
Option 2: Baby is born. He is immediately brought to my chest, we forego medical interventions and we enjoy every last second with him in our arms. We know that he is not going to survive, we make the conscious decision to go against all parental instincts, and we love on him for however long he has. It could be a minute, an hour, a week. How could we possibly look at our beautiful baby and deliberately forego any intervention? Would we feel like we were giving up on him? At least if we tried and it didn’t work, we could say we tried, right? What if the doctors were wrong, what if we’ve made this choice and he’s born and does better than expected? Will it be too late at that point to try and intervene? Or, will we be at peace with the decision to put quality of life above quantity of life. Will choosing a palliative route be more humane and more ethical than “doing everything”? Would we be relieved to know that our sweet boy leaves this Earth having never experienced pain, and suffering, but only love? Or, would we wish we had made a different choice?
There is no right or wrong answer. Every single person reading this blog would have a different idea about what was best for them, and for their family. Everyone would be able to justify their decision (not that it would need to be justified by anyone) taking into consideration different criteria. We all have different life experiences, faiths, opinions, emotions and goals. We find ourselves between a rock and a hard place. Will we cause pain and suffering for our baby, or will we give up on him. At least, that’s how it can be looked at. But, it could also be looked at in a different way. Will we take advantage of the science of medicine knowing it may or may not work, or will we love our baby to death? The selfish and anxiety ridden side of me hopes that he passes peacefully in my womb, where the monumental task of choosing his fate no longer rests on my shoulders. A smaller part of me hopes I get to meet him alive, even if it’s for just one minute. If there is one thing I’ve learned through all of this, though, it’s that I’m not really in control of any of it. I’m a total control freak and planner (just ask my husband), and maybe that’s why I’ve been able to maintain my composure so well through all of this, because really I have completely given up on trying to have an semblance of control. I can’t change any of this, even though every fiber of my being wishes that I could.
I have the added experience of being a nurse, and seeing families make decisions on behalf of patients on both sides of this spectrum. I see the 98 year old woman who’s age is higher than her weight, who’s body is tired and who is ready to go. I see her children who aren’t ready to let her go. I see them consenting to all treatments, to chest compressions that will most certainly break every last one of her ribs, to a feeding tube to sustain her body even though her mind is gone, to every last medication with side effects that will require other medications to reverse. I see the empty shell of a human who is forced to undergo medical treatment that everyone in the care team knows is futile. I also see the husband who’s wife is sick, who has been told that an experimental treatment might buy a little more time. But it also might not. That continued treatment would make her sicker, weaker, more tired. It would keep her away from home, and her family, and from having her last days spent surrounded by those she loves. And knowing that no treatment meant less time, I’ve seen people make the decision to withdraw care, go home, opt to be comfortable. To vow never to see a doctor again, or have an IV stick, be given painful medication, or eat nasty hospital food again. It’s a beautiful thing when we are able to make those decisions for ourself, regarding our own lives. But so often, it falls onto family members who may or may not know their loved ones wishes. Or in our case, we are making decisions on behalf of our child, who cannot make that decision for himself.
“And in the end, it’s not the years in your life that count. It’s the life in your years” – Abraham Lincoln