Three months ago today, we had our first consultation with the specialists at the university.
I can’t believe so much time has passed already.
On the 6th, I had my 20-week ultrasound. My mum came with me because my husband had to work and I hadn’t been doing so well at my doctor appointments by myself. I experience a lot of stress and panic around medical personnel, and I would always get left alone in the exam room for 1-2 hours, not being allowed to eat or drink anything, waiting for the doctor to come talk to me for 5 minutes before moving on to the next patient. This doesn’t work well for a claustrophobic pregnant woman. I knew if I had company to distract me, I would do much better.
The ultrasound was, honestly, frustrating and boring. I couldn’t see much of anything and couldn’t figure out how the tech knew what she was looking at. It all just looked like grey mush. I was upset almost to the point of tears that my friends who were a couple of weeks ahead of me had clear, beautiful ultrasound pictures of their babies–even with facial features–and I could only tell where the head was because it was the only distinctive thing there was. I thought that maybe in our somewhat rural city, we couldn’t afford better ultrasound equipment so my friends in big cities were just getting the top notch technology and I was getting some archaic device’s bad pictures.
Of course, as it turns out, the images were bad because of me, not because of their technology. I had just 6cm of fluid at 20 weeks, which greatly diminished the imaging capability.
I sat in the exam room with my mum for two hours waiting for the doctor (as usual). By the time she came in, it was 5:30. The office was actually closed and I was literally the last person there. She had been talking to the tech to understand the ultrasound and what it would mean for me and the baby. When she told me my fluid was low, I had no idea what that meant. It didn’t sound like a big deal–medicine is pretty advanced, so how hard is it to just put some more in there if it’s low? I definitely didn’t understand the implications at that point. The doctor looked really distressed, I looked confused (I was), and my mum started crying. That made me start crying, which made me a little angry. She said, “I’m just so upset because she’s always saying how she doesn’t like going to doctors because they always give her bad news.” It’s true; it seems to be the only reason I go to doctors: to receive bad news. That’s part of the reason I can’t stand being around them.
I went to my parents’ house to use Internet while I was waiting for my husband to pick me up after work. I did a lot of research on why fluid might be low. I realised very quickly there were no good options. Honestly, the best options sounded like my membranes breaking prematurely or the placenta not functioning correctly–and those are both terrible, too. As it stood, I knew my membranes were intact because the doctor had checked, and they said my placenta looked great and the haemorrhage was even gone at last. Some sort of kidney defect had to be the cause.
I had a second ultrasound at the specialists’ office the next day, on the 7th, because they had better equipment. To me, it looked the same. I couldn’t figure out how they could possibly tell what they were looking at. After the ultrasound, I felt terrible though (mostly emotionally), and called in sick to work for the first time in the year I’d worked there.
The next morning, we were going to meet with the specialist to discuss what was going on. November 8th, St. Michael’s day. My husband and I planned on going to Liturgy that morning, but I had been up all night crying. I knew the doctors couldn’t possibly tell us anything good and I was scared. When 5:30AM rolled around, I told him I was too tired to get up to go to church. We probably should have, especially as distraught as I was, but we didn’t go.
At the appointment, the doctor wanted to scan me yet again to confirm what she was thinking was wrong with the baby. After that, we all met up and she told us it looked like the baby had no kidneys, no bladder, and the renal arteries were not operating. The reading she’d taken of my fluid was less than 6cm, which is devastating at 20 weeks for lung development.
“We don’t save these babies. We don’t hook them up to oxygen or ventilators, we don’t put them in the NICU for assistance. Not having kidneys isn’t compatible with life, so we don’t do anything for them.”
It was all so horrible to hear and horrible to remember.
I wasn’t as shocked as my husband was, since I had been doing a lot of reading online, but I was still crying uncontrollably.
“These babies don’t usually die of renal failure,” she continued. “Without amniotic fluid, the lungs can’t develop, and they die of lung failure after birth. Intrauterine death is also common because there is no fluid to cushion the umbilical cord.”
She said we could carry as long as possible (until birth) and let it die on its own of lung failure, or we could have an abortion and kill it now. Obviously we were not interested in killing our child that we loved so much just because it had a fatal diagnosis. We both felt, and feel, like if a doctor can’t guarantee to any woman with a healthy or unhealthy child exactly how long it will live, then why should we pick when it will die? Plenty of women take home their perfectly healthy babies who end up dying of SIDs. Our baby could’ve been in wonderful condition after birth, but then died in a car accident on the way there–or any other tragic accident at any point in the child’s life from there on out. If the doctor can’t look at an ultrasound and say, “I can promise you your child will live to 75,” then I see no point in ending a child’s life prematurely because it will die. We will all die, and we don’t know when. K and I just wanted–and want–to spend every week, day, moment with this baby that we are given until it dies. We didn’t ever doubt the doctor’s prognosis that it would die the day it would be born (if not before). We didn’t want that, of course, and it was devastating, but we didn’t choose to persist in the pregnancy because we thought she was wrong. We’ve picked this long, hard road of backwards grieving so that we can share as much love with our precious child for as long as we are given. We might have a few months of pregnancy and a few minutes after birth, or we might have years and years. They are both equal in our eyes.
So we told her we weren’t interested in abortion, and thankfully, no doctor has mentioned it since. They put a note in our file and they have not pressured us to have an abortion nor even suggested it to us. I feared having to hear, “You just need to terminate this pregnancy,” at every appointment from there on out, as some women have experienced, but we have been fortunate and thankful to have not heard that since.
Our option, then, was to keep going as long as possible. We were aware that death could occur at any point–and that’s something we have feared quite a bit. We want our baby born alive, but we also want to give it the best chance at living if further life is at all possible for it.
The doctor explained to us that the growth was behind. “Right now you are almost 21 weeks, but the baby’s lungs are measuring 18 weeks. In four weeks, we will have another ultrasound and what we will likely see is that the heart is taking up the entire chest cavity since the lungs will not grow any further with such little fluid.”
(Of course, while that was logical and is what she had often seen, that isn’t actually what happened. At 24 weeks, I had 0cm of fluid and the baby’s lungs had kept growing. At 29 weeks and 32 weeks, I still had 0cm of fluid and the baby’s lungs, while still a week or two behind, had been growing. They hadn’t become stagnant at 18 weeks. This doesn’t mean the lungs with be sufficient when the baby is born–it will at the very least need a lot of assistance–but seeing progress is encouraging nonetheless.)
After the appointment, we were both in pretty bad shape. I was crying hard, and K had an expression of hopelessness that I can’t even describe. It’s painful to even think about. He made a wry comment about how first we were losing our car (we had just gotten into an accident the week before and the car was totalled) and now our baby. I didn’t think it was an inappropriate comment, though it might sound heartless. He wasn’t trying to make the two tragedies equal in weight; I think what he meant was that everything seemed to be falling apart and we didn’t know how so many really bad things could happen at once. Trying to deal with the accident and find–and afford–a new car had been really taxing on us personally, and on our relationship to some extent. Now we had to add the stress and anxiety of dealing with the inevitable: our baby was going to die and we couldn’t fix it. No one–even the best doctors in the state–could do anything for it. The car definitely paled in comparison to that.
K spent the rest of the morning dealing with his grief by composing, and I went to work to finish a project for the director that had to be finished that day. From one perspective, it was the most useless, pointless thing I could’ve possibly be doing in light of the overwhelming grief I was feeling and compared to the importance of my baby compared to the public defenders’ office’s 2013 budget, but from another perspective, the immutability and predictability of looking at reports filled with numbers was actually fairly calming. I didn’t have to answer phones, deal with customers, or make decisions. I only had to input numbers and analyse outcomes. Numbers are emotionless, and I really needed them right then.
For my husband, going to work that afternoon was helpful because he could focus on other things than the diagnosis and feel useful, providing for our family. It is exceptionally hard on him when he isn’t working (he has been unemployed or underemployed most of the time we have been married, and he feels a lot of guilt that I work full-time and he hasn’t been able to secure a similar job), so he was thankful that he was on the schedule.
That night, we said evening prayers together, but he couldn’t say any of them. I looked at him and he was crying–hard. In the 2 1/2 years we’d been together, I’d never seen him cry. It just isn’t something he does. I asked him if he were angry at God, and he said he wasn’t (I wasn’t either–being angry at God seems so pointless since it isn’t God’s fault that these things happen, and it definitely not God’s desire that they happen either), he was just so disappointed and upset. He said, “I wanted to have this baby with you. I don’t want to be told that our baby is going to die and no one is going to do anything, that nothing can be done. I want to be able to bring this baby home and raise it. I don’t want to hear that it’s going to die and we’ll just have another one later.” I reassured him we were going to have this baby, for as long as we could, but I knew what he meant. We had planned out the whole next year–we had moved to a new apartment in part for a safer environment for my pregnancy and our baby (our first apartment was a nightmare, to say the least), we had planned out how to set up our room for the baby and what essentials we would get for it (and we were planning on going shopping in about two or three weeks for the things we had chosen to have them ready to go), how we would move across the country with a baby and where we might live that would be a good place to raise a child while K was in school. Now all of our plans were falling apart, and it was hard to think of the next year as anything different from what we had discussed for so long.
It was a really hard day, and a really hard weekend for us. I was thankful that Monday was a holiday so I wouldn’t have to work–just spend some alone time to process my emotions. K was thankful he had to work every day that weekend since that’s what helped him process his thoughts and feelings.
The last three months have been a time of tremendous growth for us as individuals and as a couple. As much as I would never have wished this situation to happen to us, looking back on how much closer we are because of our mutual grief, I am thankful for it.
Looking back on it, I am also thankful that this transpired on St. Michael’s day. It seems fitting, now that I think about it, to have such a concrete reminder of the greatest sadness we have ever felt in this life so far juxtaposed to a feast of an archangel with the significance he has to our spiritual lives as well as the afterlife.
“Supreme Commander of the Hosts of the Heavens, we, the unworthy, importune and beseech thee that by thy supplications thou encircle us in the shelter of the wings of thine immaterial glory, guarding us who now fall down and cry to thee with fervour, ‘Deliver us from dangers of all kinds, as the great marshall of the heavenly hosts on high.'” Troparion for St. Michael the Archangel