I thought we had everything figured out today. That was before the appointment with the doctor.
For the past 5 weeks, we’ve been hearing the same sorts of things and been able to cope with it:
- Mother (me) has very little amniotic fluid (which turned into none last week) which is essential for baby’s development and well-being.
- Baby has no kidneys or bladder (which accounts for lack of fluid) as far as the doctors can tell (if they exist, they aren’t functioning since the renal arteries don’t show any activity).
- Baby will either die in the womb from compressing its own cord (thanks to no fluid), or will die soon after birth because of inadequate lung development. We were told that even though there are no kidneys, usually these babies die of lung failure, not kidney failure.
- The baby will be born early, most likely by 28 weeks, which is the week after Christmas.
- There is nothing we can do, and nothing even these specialists from the Big City across the state will do for us since our baby has a problem “incompatible with life.” Our only option is to just let baby die at birth, if the baby can survive for so long.
After the initial shock and horror of learning this over a month ago, we have figured out how to cope with it, more or less. The day we first got the diagnosis was the first time I have ever seen my husband cry. He made it through the entire day without tears–just looking numb–until we were saying our evening prayers and he was inconsolable. I felt very deep despair at seeing my husband crying like that, but at the same time I felt like I wasn’t alone in my own pain. We were both suffering and felt like this was some horrible nightmare we’d wake up from. So far, it has certainly been real, and we’ve learned how to deal with it and how to talk about it.
The main things we’ve struggled over talking about is the high probability that our baby will die, and how to prepare for that as faithful Orthodox Christians. How we will baptise our child if it is born alive, what sort of casket we need to prepare, where we will bury our child. I have thought through these things thousands of times but had so much trouble vocalising them to my husband. We have had a handful of sadnesses in the past 2 1/2 years we have been together (and even in the short half year we have been married), but this was unfathomable. How do people have faith, pray for miracles (and God’s will), and remain practical? How do we prepare for what the doctors tell us will happen and still leave possibility for them to be wrong?
My husband is certainly more optimistic than I am. Sometimes I think it is because he is naive, but he probably just has a lot more faith than I do. I don’t really know and it doesn’t actually matter. We tend to play the same roles in every hard decision or plan we need to make though.
We’ve met with our spiritual father twice about it so far. Both times, he has been very positive and has reassured us that nothing is outside of God’s control. We know that, but we also know that sometimes it is God’s will that the way these things “work out” is not the way we want them to. He warned us against having “faith in faith,” so that we expect a certain type of divine intervention and set ourselves up for a spiritual disappointment. He reminded us that God is always intervening in our lives and sometimes we don’t see it. To see an outcome occur as expected doesn’t mean that God hasn’t intervened.
He consulted with a very holy abbess at a nearby monastery for direction and her advice, encouragement, prayers, and suggestions were very good to hear. Last night we were able to come up with a plan for when the baby is born. He advised us to order a coffin (either from a man at our parish who makes coffins, or some other likewise suitable box), reminding us that if we don’t end up needing it, someone else will, unfortunately, need it at some point, and we could pass it on to them. He suggested it may be possible to bury the baby at the monastery, with the Sisters’ blessings, which we aren’t totally sure about yet–or we could look into purchasing a city plot nearby. There is no Orthodox cemetery in our entire state, and there are no baby cemeteries around here either. The cost of a plot is rather astonishing for a fairly poor, newly married couple, but obviously we want to take care of our baby adequately. Our priest mentioned that we shouldn’t worry about the cost; others would assuredly help us out to make sure our baby is buried properly. He instructed my husband to make sure to call the priest in town when we are going to the hospital to have the baby, then to also call him (he is out of town) to make sure at least one of them can make it in time. If there isn’t a priest available, or he doesn’t make it in time, he explained to my husband it would be his responsibility to make sure the baby was baptised if born alive–whether with holy water, regular water, or the air if water isn’t on hand. He made it clear we should take reasonable efforts to resuscitate if necessary in order to baptise, but also reminded us many times that we believe in God’s grace with babies. We believe they are illumined at conception; baptism is just always better than lack there of. If the baby can be baptised, then we can have an infant funeral for it. Otherwise, there are prayers we can say at a burial at least and we can be reassured that our baby will be in heaven praying for us. It is important for us to baptise if at all possible of course.
Then today, with our “game plan” carefully discussed and memorised, we went to a series of appointments as planned. There, we heard something different than what we had prepared to hear.
Yes, they still suspect we are dealing with bilateral renal agenesis (Potter’s syndrome), and yes I still have no amniotic fluid. Now they are saying, however, that instead of nothing being possible for our baby, it is actually possible to give the baby a chance to live. This doctor didn’t believe I would go into labour in the next three weeks, nor does she think I will go into labour at all (she believes we will need to a schedule an induction), which is remarkably different from what we had heard in the past and in itself changes many things for us. She spoke a lot about aggressive resuscitation–basically C-section, then rushing the baby off to intubate and figure out if it can process oxygen. She said if intubation was successful, then the baby would be transported to a baby hospital to get the care it needed till they could assess if it would live and if dialysis/eventual transplants would be possible. In the past, C-section was essentially absolutely unnecessary if I didn’t want it (I very much don’t) and we were told that since they wouldn’t help our baby, staying here with my family and our priests to deliver the baby at the hospital on this side of the state would be fine. Now everything is different.
They are giving us options and that in itself made me burst into tears. I didn’t think I had any left.
We had finally figured most of the “big things” out and felt comfortable with this. Now they are saying a lot of new things that I don’t like.
I like that they are acknowledging a chance that 1. they could be wrong about their diagnosis, and 2. even if they are correct, it doesn’t have to end like they were saying it does.
I don’t like that the options put us into a very difficult position. If we don’t do everything possible and the baby dies, it’s suddenly our fault that our baby dies. If we do everything possible and the baby dies, we risk never even getting to hold the baby, not being able to baptise, and risking every future pregnancy (not to mention the side effects I suffer from anaesthesia and pain medication).
When I asked if it was possible to attempt amnioinfusion to assist with a natural delivery, the doctor looked at me like I was a selfish human being who would rather my child died. Maybe I am selfish, and I can’t stop thinking about it now. Like if I don’t just blindly accept a C-section that I am a horrible mother who would essentially be fine with killing my child in the womb. Later today I had to see my former OBGYN who I haven’t seen since the beginning of November, and she basically reprimanded me for having reservations about C-sections. I feel distraught.
No one will even hear my concerns. No one cares that I don’t deal well with anaesthesia or even basic pain medications (even Tylenol makes me feel like I’m having an out-of-body experience, and my past two surgeries have caused me to plummet into rock-bottom depression for months after a week or two of delirium). No one seems to recognise that if I am left behind at one hospital for four days to recover while my baby is sent away to another hospital that I will not see it at all for days, and if it should die, I will never see it. I am not afraid of not “knowing” it, since I know the baby very well from spending so much time so close and feeling its vigourous kicks and punches. I am afraid of not holding it, not hearing it cry (if it even can), and not getting to see it breathing (or attempting to), get to see it moving and responding to our words. I am afraid of being so far away from my family and close friends and the priests we know. I am afraid of being alone in a hospital away from my baby for so long. Everyone seems to belittle the very real issues that occur to many women who attempt to have another baby following a C-section. I have always had a lot going against me in the child-birthing department; I feel like this would be the nail in the coffin to us ever having living children.
I don’t want to be selfish. I want to give my baby a shot a living, even though I know it is incredibly remote. I don’t see why the options have to be “do nothing and be merciful” or “do absolutely everything to try” and anything in between is being selfish. I have never wanted my baby to die, but I know that even with our best efforts, it has a 99% chance (or higher) of not making it. Is there ever a mark that can just be trying “enough,” and is there ever a point where we are trying too much? I feel torn a thousand ways.