TFMR: An Impossible Choice
Bilateral Multicystic Dysplastic Kidneys (MCDK) - this is the tongue twister of a condition Archie was diagnosed with at our 18 week anatomy scan. I had never even heard of such a condition, which makes sense because it is rare. Knowing next to nothing about MCDK, pregnancy in general or medical science, left us at the mercy of the doctors’ explanations and our own research. During that first awful conference room chat, just moments after our anatomy scan, the doctor explained that Archie’s kidneys had not formed properly - they were filled with cysts. Since his kidneys were not functioning as they should be, Archie was not producing any urine, which news to me - is what the majority of the amniotic fluid surrounding the baby is - urine. Not only were his kidneys an issue, but because there was no fluid surrounding him, we were advised his lungs would not develop properly either.
It was too much information, and not enough at the same time. Of course our first question was, “What does this mean?” If a baby has one multicystic dysplastic kidney that baby will likely be perfectly fine. The affected kidney will essentially disappear over time and they will be left with one healthy, functioning kidney - all that is needed for survival and a fairly normal life. However, both of Archie’s kidneys were affected, leaving him with no functioning kidneys. Bilateral MCDK is even rarer…the chances of this happening were so slim, yet here we were. It was happening. Our two options had been laid out for us during that first conversation - go to term and if he survives that long, he will either be stillborn or live just moments after birth. Or, terminate the pregnancy. As I mentioned at the end of the last post, there was also a ticking clock… In the state of North Carolina, a termination cannot be performed after 20 weeks, 6 days. Period. It doesn’t matter what the circumstances are. Ridiculous in my opinion, but nobody asked me… There wasn’t time to sit with this news and process it. We weren’t able to take a week to weigh the pros and cons, to seek a second opinion, to pray. We had to make this decision like yesterday.
Enter option three - let me explain a few things about the clinical trial we were informed about the morning after our anatomy scan. There are several trial locations throughout the country. The closest to us being Johns Hopkins, in Maryland. I reached out to the contact person at Johns Hopkins after we got home from our meeting with the genetic counselor, just over 24 hours after our anatomy scan and Archie’s diagnosis. In order to participate in the trial, we would need to travel to Maryland the following week (it was Tuesday, May 9th, at this point), where I would undergo testing to determine if we even qualified for the trial. The results would take roughly three weeks. In three weeks we would be past the 20 week, 6 day cutoff for a NC termination. This was infuriating to me. Again, there just wasn’t any time to decide - thanks to a stupid law that doesn’t take into consideration the hell that parents considering the termination of a wanted pregnancy have to go through. I hands down, 100% would have gone to Maryland to see if we qualified had there not been the 20 week, 6 day cutoff. But, knowing the timeline we were working with, if we waited to see if we qualified and didn’t or decided not to go through with the trial, we would then have to seek a termination out of state. Our doctor advised that we could try and do that, but it would be very difficult. So, essentially we had to make a decision without knowing whether or not we qualified for the trial. Assuming we did qualify, we would need to move to Maryland prior to 26 weeks and stay there through postpartum. This would mean renting an apartment, or other long-term rental, in Maryland. It would mean Vinnie requesting medical leave from his job, which is our primary source of income. And, it would also mean being completely secluded from our friends and family - our support system. We don’t know a single soul in Maryland. The logistics made my head spin, but this was our child. We had to do, to try everything, right?
Participation in the trial would have looked something like this: me going in three times a week, starting at 26 weeks, to have fluid inserted into the amniotic sac so that Archie’s lungs could develop. If Archie survived birth, he would then immediately be placed on dialysis for the next year of his life. At the one year mark he would have needed a kidney transplant. It seemed like a long shot, but I was holding onto anything I could get ahold of. The genetic counselor had given us a brief overview of the results thus far (this is an ongoing trial), which weren’t especially hopeful either. Out of a handful of babies, I believe she said eight, three had survived and were approaching their first birthday, which would be followed by a kidney transplant. The other babies in the trial had either been stillborn or died shortly after birth. To recap, we could have gone through this entire trial and more than likely would still have ended up with a stillborn or a baby who died in the delivery room. I know myself, and I knew I would not survive going through this process and still losing Archie. But, could we seriously not even try?
I agonized over which decision was less selfish. Was it selfish to terminate the pregnancy? To take the “easy” way out? Or, was it selfish to put our son through so much, just because we couldn’t let go of the idea of him? I kept thinking about his quality of life if he survived. I couldn’t fathom putting a baby through a year of dialysis. There just really was no good option. We talked with our parents, with our sisters, with our best friends, all of whom were so incredibly supportive. Every single one of them let us know they would support us no matter what we decided to do. I will never be able to tell them how much this meant to us.
After a long day of back and forth, we decided to go to a Mexican restaurant for dinner, mostly to get out of the house. When we left home, I was almost certain I wanted to see if we qualified for the trial, and participate if accepted. By the time we pulled into the restaurant parking lot, I had changed my mind. I don’t know how to explain it exactly, but I just had this overwhelming feeling that this was not a battle we were going to win. This trial was not our journey. It just didn’t make sense for us. It feels selfish to say, but mentally I knew I was not strong enough. Financially, it would have been suicide for us…and that sounds shitty (and it is), but you have to think about that. You have to think about if you can afford to try and keep your baby alive. Physically, I was past the point of caring what I had to go through, but I did care what Archie would have to endure. Vinnie and I talked about it over dinner, and ultimately decided we would terminate the pregnancy.
