Warning: This may be a controversial post for some. I am not trying to be offensive in any way- just sharing our thoughts about a sensitive subject. You don't have to agree with me by any means; as a matter of fact, I expect very few of you to agree with me. That is fine- in such a personal matter, we can only come to truly know our own beliefs through deep introspection, and this post is the result of such for John and I, which has been fueled by our own experiences as well as through examination of research. Please know that I post this with the utmost humility and sincerity, respecting the sanctity of human life.
The V Word. Kind of a dirty word, in a way... a word that makes me feel dirty, somehow. But not really "dirty" the way a cuss word is dirty, nor greasy the way it is when speaking the word "moist." More like unsettling- like the feeling the word "scabies" induces in me- minus the itching and grossness.
It's a clinical word- a word we don't use at home. Technically, our baby achieved the age of viability on Saturday, the 24 week mark of this pregnancy. However, viability at 24 weeks is only truly viable if the baby weighs more than 500 grams (a little over 1 pound.) Under 500 grams, the babies don't really live- or at least, don't live long, even with advanced medical interventions. My sister works in a NICU where they are well-known for pioneering interventions to keep tiny babies alive- they top the list of hospitals to have discharged the smallest babies. But even those tiny babies were gestationally older than our baby is... at this point- between the 24th and 28th week, our baby will go from needing a ventilator and extended NICU stay, to being able to breath fairly well without a ventilator and only needing a relatively short NICU stay. Even still, NICUs and Neonatologists around the world are trying to figure out how to keep babies that are not even at the 24 week mark alive, even if it means they live their entire lives hooked up to machines. And even if it means that many of them will not make it past the one month mark- let alone into childhood.
There are stories out there of babies who were 24 weeks- or even younger- and did amazingly well and had outcomes far greater than what could be expected of a baby of comparable gestational age. While I am not one to discount miracles, I often think that those babies were probably older gestationally than they were thought to be. I mean, how many women can pinpoint within 24-36 hours the time that their baby was conceived (besides me)? More than 50% of babies in this country are "surprise" babies, and women are often shockingly uncouth when it comes to the intricacies of their fertility cycle, not to mention that all women are assumed to have a 28 day cycle when determining gestational age, and many, if not most women who are not on birth control do NOT have a 28 day cycle.
But anyway, the V word came up at our last OB visit. The doctor said flat out that now that we were close to viability, we need to consider every decision that would remove me from immediate access to top-tier OB and NICU care (or at least the best of what is available in our area. Which isn't really too shabby- you know, my hospital delivered and cared for the Gosselin sextuplets. And I've been seen and examined by both of the OBs mentioned in that article:) While I agree with the doctor in some ways, it really did freak me out.
I guess, up until this point, I knew that if something were to happen, knowing that medically the baby did not meet the criteria for viability, John and I would be completely in control of the decision-making. We would get to choose to deliver or try to stop the baby from coming based on what was safest and best for both the baby and I. If we delivered, we would be in control of that situation, too, knowing we could choose to simply kick everyone out after the baby was born and just be alone with our angel.
But suddenly, knowing the baby is "viable" (and our little Nugget is estimated to weigh over 500 grams right now), we as the parents get fewer choices. Suddenly, if something were to happen, the decision-making would be skewed, and the power placed into the hands of the neonatologists that might have different priorities than we do. The OBs would almost certainly defer to the advice of the neonatologists, and this would no longer be about John and I and the life I am carrying, but about a baby whose parents are just trying to hang on during the crazy ride that is life in the NICU.
Don't get me wrong, I admire and respect neonatologists. I have a huge amount of respect for NICU nurses- it is a field of nursing I don't think I could ever pursue. But sometimes, I think that we as parents have different priorities than they as health care providers have.
John and I are big proponents of palliative and hospice care in the patient population that we serve. We feel that length of life is secondary to quality of life. Often, when patients are facing circumstances where they can prolong their life without having any quality of life- sometimes without even the capacity to think, feel, or engage in life, there is a group of care providers who want to keep fighting for prolonging life, and there is a group of providers who wants to focus on bringing as much meaning and fulfillment into the remainder of the patient's life. This is a discussion that is often made easier when the patient is of advanced age and deteriorating health- I mean, most people feel better about palliative and hospice care when you are talking about your 95 year old grandma who already has had dementia and 2 strokes. It's harder when you are talking about options with the 62 year old gentleman who is awaiting the birth of his first grandchild while his cancer wreaks havoc on his body despite all the chemo and radiation we can throw at him. But, John and I both strongly feel that despite the circumstances, our focus should be on helping patients achieve the quality of life they want. Which means, if what they want is to die knowing that every option was exhausted- even knowing that their chemo was killing them, then we should do that. But if what they want is to die surrounded by family and friends, pain-free and peaceful, then we have an obligation to make that happen to the best of our ability.
We feel this way because we believe that it is not the beating heart and the exchange of oxygen and carbon dioxide that make a life. Life is truly so much more than biochemical processes. Living is more than keeping cells alive and reproducing. And even thought we often have medical technologies that can keep those biochemical processes going- sometimes indefinitely- they should be used with discretion. Just because we can treat doesn't mean we should. As the providers, this is rarely, if ever, a decision that is left to us. This is a decision that the patient- if they are able- and the patient's family must make together. But we as the care providers are there with them as they make these decisions.
We believe that a baby, regardless of gestational age at birth, is a gift. The life of that child is precious, unique, and a great responsibility for us. It is our job as parents to foster our children's quality of life, not just length of life.
And at 24 weeks gestation, just because we can continue the biochemical processes through technology doesn't mean we necessarily should. As providers, we know this. As parents, we feel strongly about this. As a person of faith, I know that miracles can happen, but I also know that I am not the person choosing who is granted a miracle. I also know that miracles will happen without regard to the medical interventions we provide, and sometimes in spite of them. I choose to put my faith in God, not in man- not meaning that we discount the medical technologies, rather that we chose to use them with discretion.
But at the end of the day, neonatal care is one area where no decision-making is given to the patient (obviously) and very little is given to the parents. Options for palliative care- care that focuses on quality of life rather than length of life- are few. In fact, while I don't know the exact procedure at our facility, I do know that in some circumstances, parents have been stripped of their decision-making rights and children have been placed in protective custody over the choice to treat or palliate neonates. I mean, these doctors are neonatologists, not perinatal palliative specialists- their priorities are to treat and prolong life. And sometimes those who don't agree with their decisions get plowed down- even if it is the parents.
Again, I don't want to say this is true, necessarily, at our facility. But I do know that having reached the age of viability, there will be tremendous pressure on us as the parents to allow the neonatologists a free hand in determining the care our baby would receive. And we don't know that we would agree to using all of the interventions that medicine has to offer. We can't say now what we would or would not do as so much of our decisions would be based on the baby and how he/she was doing as well as gestational age, but the point I am trying to make is that we want to be able to make the decisions that we feel are most respectful of our child's life and purpose in this world. And having reached a point where science and medicine become single-minded in goals of treatment, we want to keep our options open.
Viability means being capable of living. But the definition of living is what I question in the world of neonatology. Knowing that our definition and the definition of the doctors might be very different makes me nervous... and sad.... and in a way, it makes me feel a little bit dirty. Not because I think my definition of living is wrong, but rather because I think the doctor's definition of living is so removed from what life really is. I think medical technology has perverted the meaning of living and reduced it to a series of cellular processes. And I want our baby to have more than cellular processes, even if it means it is only for a few moments that our baby gets to truly live.