Monday, May 13, 2013

pPROM: Day One - Part 2: Dealing With The Numbers and Hypotheticals

**Warning: This is an extraordinarily difficult post for me to write. Please be kind in your responses and remember that I am sharing what happened at the worst moments/**

I was wheeled over to the OB Special Care ward of the hospital where they put me in a room. It seemed like there were people everywhere. I don't actually know if it was really as chaotic as I remember it, but it was incredibly overwhelming at the time. The nurse and doctor from triage came with me and there was at least one nurse from special care. Within what seemed like just a few minutes an ultrasound tech arrived with a portable machine. My situation was considered too "unstable" for me to be taken downstairs for the ultrasound.

I don't know how to describe how I felt during that ultrasound. It was a complete mix of emotions at the time. I was so relieved to see them both moving and they looked so much bigger than the last time I had seen them. I fell in love all over again, the same way I do at every ultrasound I've ever had. Those were my babies and they were clearly doing ok in there. Yet, that was part of what made it so hard. Those were my babies and they were clearly alive...yet they were telling me that I would likely go into labor either that night or within 2 days. My strong, living babies would come too early and stood a good chance of dying. I paid extra close attention to the ultrasound though, because I was so scared that it would be the last time that I would see my boys alive. Ronan's estimated weight was approximately 1 pount 9 ounces and Corbin was estimated at 1 pound 10 ounces. They were in the 69% and 75% for their gestational age. The tech and doctor were surprised that both babies had a similar fluid level. Ronan had 3.1 cm of fluid and Corbin had 3.2 cm. The doctor was so surprised by this that she did an additional test to make sure that my water really had broken. She ran a test called "amniosure" which is new, but basically foolproof. It came back positive as well. Since no one knew how stable my condition was at the time, they wouldn't let me out of bed to use the restroom...so I got to suffer the indignity of using the bedpan while my husband, the ultrasound tech, and the doctor stood on the other side of the curtain and a nurse helped me. It's funny that this stands out in my mind, but I think it's because it added to my fears that the babies would come at any minute.

They decided that the safest option for the night was to transfer me over to Labor and Delivery for the night to be monitored in case I went into labor. So, I was wheeled down the hall and put in a delivery room. The L&D resident talked to me, but I don't remember anything that she said at all to be honest. I was receiving IV antibiotics and was also given a different type of oral antibiotic as well. I was on IV fluids since I wasn't allowed to eat or drink anything just in case. I did finally get bathroom privileges though, so that was a relief.

The moment that will stand out the most in my mind forever though is the consult that we had with a resident from the NICU. He told us that the odds of the babies surviving at their gestational age was 52% and that if they did survive, the odds of "significant morbidity" was above 90%. He then went on to list all of the possibilities included under "significant morbidity." He wasn't American and I couldn't understand him particularly well to be honest. I don't know if it was his accent, his very cold and logical mannerisms, or that I was completely overwhelmed altogether. I do remember hearing "cerebral palsy, brain bleeds, blindness, deafness, chronic lung disease" and a host of other things. I clung to that 52% and let the rest of it wash over me. I literally could not process what he was telling me. To be honest though, he made no effort to really explain what the numbers he was spewing out meant. I couldn't even wrap my head around what the word "morbidity" meant in my state of shock.

After he left, the on-call doctor from my OB Practice came in to speak to us. She is the one who told us that the NICU resident's report stated that the babies had a 4% chance of intact survival. Intact survival basically means survival without significant physical or mental deficits. So, each baby had a four percent chance of living and not being significantly impaired or disabled. Suddenly the 52% that I had been clinging to in my mind didn't seem like such a life raft anymore. She asked what we would want to do and I said that I wanted life saving intervention. I wanted them to do everything in their power. I don't know if that would have been the right decision. Maybe it was selfish to want the babies to live no matter what the cost in terms of quality life might be. Luckily I didn't have to find out if that was the right call or not. That conversation and those that followed with my husband still haunt me. We were both in shock and I don't know if either of us can be held accountable for what we said and felt at the time, but I do know that he didn't necessarily agree with my decision. He told me that he would rather be dead than significantly disabled and I told him that as long as I wasn't a complete vegetable, that I would want whatever chance there was to live. Since that night, we have come to an agreement that any chance at life is better than none and he has reassured me time and again that he will love our boys no matter what the outcome is, but that night and the doubts it created will haunt me forever. I honestly don't know who was right. Is there really a right decision when the odds are so poor? Was I being selfish by being willing to put the babies through so much suffering in the NICU and after for such a slim chance at life? Maybe...but it was the only choice that I felt like I could make.

The tough decisions didn't stop there. The OB also brought up a hypothetical situation unique to twins where one twin has ruptured but the other has not. What did I want to do if Baby A (Ronan) was in distress and Baby B was still doing well? pPROM carries with it a significant risk of cord prolapse and other cord accidents that can cause a baby to go into distress and ultimately pass away in the womb. The lack of fluid makes these events more likely. In a singleton pregnancy, they would choose to deliver the baby in distress every time to save his or her life. However, with twins this early on...it would be putting Baby B's (Corbin) life in significant danger to deliver them. Ultimately, I was asked to decide whether I would be willing to let Ronan pass away in the womb if he went into distress in order to give Corbin the best chance of survival. Keep in mind the statistics that I just told you about the odds of survival outside of the womb. How can a mother make a decision like this? It's even worse than the first decision. I love both of my babies, equally and without reservation. I deferred to the recommendation of the doctors...I would have let Ronan die in order to try to save Corbin. There was no guarantee that either of them would live if they were born. I think I will always feel guilty about making that decision. Logically, I know it was the right choice. The option that would have given me the best chance of bringing at least one baby home with me...but being forced to make that decision has probably permanently damaged the image that I have of myself. I might be asked to make the same decision again too...and now I don't know what I would do. The numbers are so different today than they were then that I don't think I could make the same choice. Yet, not making it could ultimately cost me both of my sons.

Nobody tells you that being a mother might require you to literally make life and death decisions about your children. When faced with the thought of your babies leaving the hospital in two tiny caskets instead of the car seats sitting in your nursery, somehow you make the impossible choices. I don't know if I made the right choices in that moment. I don't know if there really were any right choices to make. I do know, however, that I have been forever changed by those hours. Not for better or for worse, just changed.

3 comments:

  1. I am so sorry you have to go through this. It is so hard to even think about making those types of decisions. But keep being strong and every day counts. You are doing great! You and your boys will be in our thoughts and prayers.

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  2. Oh my, what a situation. I really think you are handling it as well as anyone could. You're thinking through things logically and thoroughly. It is ok to question yourself about whether it was right or wrong. But ultimately, you're going to make the decisions that will be best for you and your family, and that should give you peace. Praying for you and your LOs!

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  3. Wow! What a difficult position you were put in! I pray that you're pregnancy gets easier and you don't have any more difficult decisions. I'm praying for you and the boys!

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