The day before I was supposed to go in for my ultrasound for analyzing whether or not my baby had spina bifida, I started bleeding again. It was noticeably lighter bleeding and significantly less pain than I had been experiencing until that point. It was still worse than a normal period, but I could move about with the pain and did not find myself worried about how I would drive all the way to the hospital with all that discomfort.
I met the genetic counselor before I had the ultrasound. She asked me a few questions about family medical history on both my and my husband's side of the family. Then we talked about the fact that there was a real possibility that the AFP test could have been inaccurate because of the bleeding that I had had. She also talked about something called 'echogenic bowel' in a fetus. That is a bowel that appears to be bright on the ultrasound. It is another indicator that something could possibly be wrong with the fetus, but it can also happen when there is bleeding during pregnancy. She told me that she was telling me about this so that I would not be too alarmed if they saw something like that during the ultrasound.
The counselor informed me that in general, about ninety percent of spina bifida cases are detected on ultrasounds. Since my odds for the disorder were currently at one in six hundred, if there was nothing abnormal detected during the ultrasound, the odds would go to one in six thousand. Then I would no longer be considered to be at a high risk for spina bifida and they would just continue to monitor me regularly to make sure that the baby was growing properly.
I did not feel like the discussion with the genetic counselor had been of too much value to me, but I knew that they were required to have this kind of discussion with a patient who had had abnormal test results. I also knew that I had signed myself up for this kind of discussion when I had chosen to have the tests done. They had given me the option to avoid doing the tests, and I could have taken them up on their offer.
I went in for my ultrasound a few minutes after the conversation with the counselor was over. This was a technician I had seen a few times at the RE's office, but I had not seen her in recent times. She seemed only vaguely familiar to me but I did remember her name. She scanned every part of the baby's anatomy, just like all of the other technicians had done at all of the other appointments I had had at Maternal Fetal Medicine. She said that the baby's spine looked normal and did not seem to indicate spina bifida, but the doctor would do the actual diagnosis on that. I asked her if she thought the baby was growing on track. She said that she thought so. I asked her if she could still see the hematoma. She could. I asked if it was any smaller than before. She said it was hard to tell. I was rather confused by that response. Until that point, all of the technicians had given me exact measurements, down to the millimeter, on how big the hematoma was.
And then came the moment I had been waiting for. The technician asked me if I knew what I was having - a boy or a girl. I said no, but I expected to find out with this scan. She said that it looked like a little girl in there, but the doctor would confirm that.
As she pointed out the baby's arms and legs and belly to me, she used the phrases "her arms" and "her legs." That was the first time anyone had used a gender specific pronoun for my baby. I also saw my baby moving her arm, as if she was waving to me, although obviously she had no idea at that very young age about waving to someone. But in those few minutes, I felt very connected to her, more than I had felt so far. Suddenly I was able to visualize her as an actual baby in my arms or in a crib, now that I knew she was a girl.
I was happy beyond words to hear that I was going to have a girl. I had always, always wanted a girl. After the technician left, I spent a restless few minutes in the room, waiting for the doctor to come in. The doctor came in and introduced herself. She went over the facts that I had had an abnormal AFP test and some bleeding shortly before the test. She agreed that the test could have been thrown off by the bleeding, but said that there would still be some concern about whether or not the baby was growing normally and that they would want to monitor me every three weeks or so. No big deal, I thought. I had been seeing them about every three weeks until that point anyway. I was basically used to all the frequent appointments at this point.
She looked at the baby's spine and pointed out that the baby was lying on its back, so it was hard to see the spine, but from whatever she could see, there seemed to be nothing abnormal. She asked me if I knew whether I was having a boy or a girl. I told her that the technician had said that she thought it was a girl, but wanted her to confirm. She agreed that she saw a girl in there.
I asked her about the hematoma. I told her that, at my last appointment, I had been told that it was clotted and healing. She said that it was clotted, but even after it clots, it has to go somewhere. It has to either be reabsorbed into the body or bleed out. This one was positioned right above my cervix, which was a position from where it was more likely to bleed out than be reabsorbed. That did make sense to me, but it did not put my mind to rest or put an end to the worrying.
Even so, I was beyond excited when I left the doctor's office that morning because I knew I was having a girl. I was growing less worried about the bleeding because it was lighter than it used to be and it did come with less pain, and the doctors did seem to think that it was healing.
The bleeding slowed down to just spotting later that day, but it did not stop completely like it had always done in the past. The spotting continued for a few days and then the bleeding became slightly heavier for a few hours, and then went back to spotting again. This pattern kept itself up for the remainder of the pregnancy.
A week later, I had an appointment with the regular OB. These appointments had generally been uneventful. She asked me how I was doing with the bleeding. I told her that I had been spotting all week, with some heavy bleeding in between. She said that she would need to listen to the baby's heartbeat with the Doppler. She listened, and I listened too. The heartbeat was strong. The doctor said that it sounded really good. It was good to hear that, and to actually hear the heartbeat too.
The doctor told me that it was okay if I wanted to just put up with the bleeding at that point, since I was between nineteen and twenty weeks then. But once I got to twenty three or twenty four weeks, I would need to come in immediately as soon as I saw anything more than spotting, even a moderate flow. She said that at that point, the baby is considered viable and that they would want to do everything they could to try to keep the baby inside, and if not, to get the baby out safely and into the neonatal intensive care unit (NICU). Until then, if I had bleeding that was actually signalling a miscarriage, there really wasn't anything that they could do about it.
I did not like the idea of delivering my little girl at twenty three or twenty four weeks. I knew that babies born that early did not fare too well, even in the very best, state of the art NICUs. But it was somewhat reassuring to know that I was getting close to the point where my baby could, potentially, survive outside my body. It was a milestone in the pregnancy, and every milestone meant that I was getting closer to the end of the pregnancy and closer to actually holding my baby in my arms.
At this point, the baby seemed more real to me than ever before and I could actually imagine giving birth to her. I started feeling safe and secure with the prospect of having a baby and told my brother and his wife and a few of my close friends.
I was really bonding with my baby at this point. Once we knew we were having a girl, my husband and I started thinking about names. It was easier to visualize her as a little baby and as a toddler in a cute pink dress. I was also feeling movements more frequently. I got to know that she moved about more when she was hungry, like early in the morning when I had not eaten in a few hours. She also moved about more during long car rides and train rides. She either really loved those rides or completely hated them.
One time, my husband was singing loudly and a little out of tune for no particular reason except that he was happy and the baby started moving about really vigorously. I told him she was excited to hear him sing and was probably trying to do a little dance in there. He tried to feel my belly but he could not feel anything. He kept asking me when he would be able to feel the movements. I told him it would probably happen around twenty three or twenty four weeks. We were about to find out very soon afterwards that we would never get to that point.
We had scheduled our childbirth education classes for my second trimester, since that is the time when a pregnant woman is supposed to feel the most energetic and comfortable. We had a labor and delivery class scheduled as an all day session on a Saturday. I noticed that most of the women there were around seven or eight months pregnant. I was a day under twenty one weeks and still wearing one of my regular tops with maternity pants. Sure, the top was a little stretchy, but I could not have worn it if I was as far along in my pregnancy as most of the other women over there. I was due in early August. Most of the others there were due in April or May. Until that point, I had been concerned about whether I was showing and whether I was visibly pregnant enough for people around me to notice. That was the first time I was conscious of the fact that I was not really showing.
The Monday following that class, we had a child safety and infant CPR class in the evening. We attended both of these classes gathering information that we thought we would use in the near future. We spoke to the nurse who taught the CPR class about a different class that we were supposed to attend the following Monday. She said she would probably be teaching that one too.
We also started looking at pediatricians and made prenatal appointments with a few of them so that we could get to know them and see how well they fit in with our needs and expectations. We also assessed a few day care centers and actually zeroed in on one and even made a booking deposit.
Three weeks after the ultrasound where I had found out the gender of our baby, I was supposed to go in for another ultrasound just so that they could follow up on the baby's growth and make sure she was growing normally. They were still concerned that she could possibly have spina bifida and the disorder tends to restrict the baby's growth in utero. As it happened, that ultrasound was the day after our infant CPR class.
I was spotting the whole time since the last ultrasound that I had had. I had had a couple of episodes of heavier bleeding as well, but those had been less painful than they used to be. The bleeding had also been lighter. All of that made me feel hopeful that the hematoma would be smaller, almost gone, the next time they got to look at it.
This ultrasound was scheduled for quite early in the morning, and my husband did not have any meetings on his calendar that morning. So he decided to go with me to the hospital. This was the first time he was accompanying me to a pregnancy related doctor's appointment, barring the one we had gone in for when we were traveling internationally. I had told him about how you can see all the parts of the baby's anatomy on the screen, and how I had once seen the baby waving at me. I had told him about how, during one ultrasound, the technician kept saying that the baby was moving all over the place and how I thought that the baby had definitely taken after him in that regard. He was excited and looking forward to seeing all of that on the screen for himself.
My husband had asked me how long these appointments were expected to take. I had told him that the technicians generally spent about fifteen minutes scanning the baby and then the doctor would come in and talk for five or ten minutes. I told him that the technicians generally pointed out everything, arms, legs, head, belly, even kidneys, as they went along.
That particular day, the technician scanning me said that the baby was curled up in a little ball and it was hard to see her anatomy clearly. She pointed out the head and feet, but not much else. She left the room in a bit of a hurry. My husband asked me why she had left so quickly and why she had not really shown us anything. I said it was probably because the baby was curled up in a position where it was difficult to see anything much. But my intuition told me that it was because she thought there was something very wrong but did not want to scare us unless she was absolutely sure. The only way to be sure would be to have a doctor come in and cross check what she was thinking.
The doctor came in soon enough, thankfully, so we did not have a lot of time to worry and wonder about what was going to happen. He came in and said that the technician had had some concerns. That was my worst fear come true at that point. What was to come after that was something I had never imagined or thought about and therefore, never feared.
The doctor scanned me himself and said that what he saw there was very little amniotic fluid. He said that I should come back the next day or within the next few days to see if the fluid was increasing. If it was not increasing, he said, then we would have to talk about our "options."
I was a little too confused to react at that point and did not really know what to say. My husband said that we should probably talk about those options right then.
"What are our options?" my husband asked.
"Well, termination," the doctor said.
The doctor went on to explain that without adequate fluid, the baby's lungs cannot develop. If that does not happen, the baby can never survive outside the womb. He said that the fluid could possibly be low because my amniotic sac had ruptured, which is to say that my water had broken, or that the baby was not getting adequate nourishment through the placenta. He said that I had had an elevated AFP marker, which probably meant that something was wrong with the placenta.
I pointed out that everybody had agreed that the elevated AFP was probably because of the bleeding that I had had. He said that it could possibly have been because of that, but the AFP was very significantly elevated and should not be so unless the placenta was not functioning properly. He also mentioned that the sac could possibly have ruptured because of the blood clot that I had had. I said that I had been told that it was healing and that it was positioned right above my cervix. He said that even if it was above my cervix, it had to have been formed elsewhere. The source was somewhere else. And that source could have caused other problems. It had probably been healing, but subchorionic hematomas were "poorly understood". I asked him how big the hematoma was then. He said he could not really see it, but that was not the biggest concern at that point. The lack of fluid was a much bigger concern.
My husband said that we thought that once you were in the second trimester, this kind of thing was not supposed to happen and that was why we had told a lot of our friends and family. The doctor agreed that they usually did not see problems this late in a pregnancy. He was fairly stoic about it. I know he had to be detached and needed to avoid getting emotionally involved with his patients' problems. He was a high risk OB and he probably saw patients go through difficult pregnancies all the time. If he became emotionally involved with all of them, he would probably be spending most of what he was making in paying a psychiatrist's bills. Or he would have to quit what he was doing or risk going insane. But even so, it seemed extremely odd that a person talking to me about something so heartbreaking for me would show no emotion at all. He said a rather cursory "I'm sorry," but that was about all.
I asked him what kind of odds he would give me at that point. He admitted that the probability of things improving was much lower than not. I asked why he thought that the fluid levels could go up suddenly if I came in the next day. Should I not wait for a week or so? I was thinking that I should wait for a month, but I managed to say only a week. He said it would be okay to wait until Thursday or Friday. It was a Tuesday. But he pointed out that we should not wait too long, because I was already twenty one weeks and two days pregnant and that the State law did not permit terminations after twenty four weeks. The longer you put off the termination process, the harder it gets. He meant that it gets harder to do it physically, because the fetus keeps getting bigger and stronger. But I don't think I knew at that point how hard it would be emotionally. I was still in denial, and still hoping against hope that things would turn out fine. But I had to admit that the odds had never been stacked against us before. I had had difficulty getting pregnant, but the doctors had never said that it would not happen. They said it would take time, but it would happen. I had the hematoma and I had a lot of bleeding, but the doctors said that, more often than not, things turned out fine in cases like mine. This was the first time somebody was telling me that things were more likely to not turn out fine.
The doctor asked me if I had seen any one particular doctor at Maternal Fetal Medicine more regularly than the others, or if I felt more comfortable with any one of them. I told him that I had had three appointments before then, and had seen three different doctors. He was the first one I had seen for a second time. He said that I should feel free to make an appointment for Thursday or Friday with whoever I wanted to see and get a second opinion from. He understood that this would be a big decision for us and pointed out that he and the others in his team did not take it personally when a patient went to someone else for a second opinion. He added that I should probably also talk to my regular OB if I felt more comfortable with her and wanted to take her opinion as well. He pointed out that we should definitely not make any decisions based on just one ultrasound.
He asked me if I felt like I had been leaking fluid and if I suspected that I had broken my water. I told him that I had been spotting constantly since the last ultrasound and had been wearing protection all the time, so I would not have known if I was leaking fluid. Since he could not eliminate the possibility that I was leaking fluid, he informed me that if I were, it could possibly lead to an infection. Such an infection could have potentially serious consequences for me. I should take me temperature at least once a day and call them or come in immediately if the temperature rose above a hundred degrees.
I asked him if I should go about work and other activities as usual or take it easy. He suggested that, until the next appointment, I be on what he called modified bed rest. That basically meant lazing around for most of the day but not necessarily being in bed all the time and being allowed to get up for short periods of time. He asked if I was allowed by my employer to work from home. I told him I was not. He said that I should just take a few days off, and if my employer gave me any trouble, I should call his front desk staff and they would send a letter to my employer. I told him I did not think that would be necessary for only three or four days off, but thanked him for offering to do it.
As soon as the doctor left the room, my husband and I just hugged each other and cried. We stood there crying for a few minutes. Just when I thought that things were beginning to look up and just when I felt like I was really going to have a baby, hope was snatched away from me.
I made an appointment to see the more experienced doctor whom I had seen before, the one who was the Director of Maternal Fetal Medicine, on Friday. My husband asked for a copy of that day's ultrasound report. We would need that in case we wanted to get a second opinion from someone who was not associated with that particular hospital.
My husband and I walked over to a different wing of the hospital to visit the OB's office. I told the lady manning the front desk that I had a rather complicated situation and wanted my OB's opinion on it. I asked if there was an appointment available for Friday after the morning's ultrasound. She looked at her computer for a while and said that there wasn't, but if we were willing to wait for a few minutes, she would go in and see if the doctor could see us right then. So we thanked her and settled down to wait on one of the couches in their waiting room. A doctor's assistant came by for me shortly afterwards and took me to an examination room. She said that she thought I might be more comfortable waiting there, rather than in the waiting room full of pregnant ladies. She did not actually say the last part about the waiting room full of pregnant ladies, but it was clearly implied and I thought it was rather considerate of her. She said that she had read the report and it basically just said that I needed to follow up later that week. I had not actually read the report myself until then, so I had no idea what it said.
The assistant was trying to catch hold of the doctor on call that day, who was a doctor I had not met until then. I was not sure that meeting such a doctor would be very valuable to me, but I trusted that all of the doctors in that particular facility would be good at what they did. As it happened, she could not find the doctor on call, but a different doctor was available. This particular doctor was the Chair of Obstetrics and Gynecology at that hospital and he was the doctor I had originally wanted to see when I first got pregnant and had a chemical pregnancy. He was the reason I was seeing doctors at that particular hospital in the first place.
This was probably the most experienced OB-GYN at the hospital. He was just looking over my reports when the medical assistant led us into his office. He introduced himself, even though he did not need to, and then said how sorry he was that he had to meet us in such a situation. There was genuine concern and sympathy on his face. That was in stark contrast with the way the other doctor had reacted to the situation. It was nice to see that he actually cared. Not that it made a difference to the situation one way or the other, but it was nice to see that the doctor was also human, just like us.
The three of us sat down around a small round table in his office. The doctor said that he had looked over my reports and understood that the doctor at Maternal Fetal Medicine had talked to us about termination. We said yes, he had, and asked him if he would recommend the same thing. He answered in the affirmative. He reaffirmed how the baby's organs, especially the lungs, would not develop properly without enough fluid in the amniotic sac. He did also say that we certainly needed to come back for a follow up ultrasound and make a decision only after that, but we needed to understand the situation. I asked if the fluid level was still low on Friday, could they possibly do anything to fix it? He mentioned that some people had tried injecting saline solutions into the sac, but it just did not help. There was a bigger risk that I would develop an infection because of the leaking fluid and an almost zero chance that the baby would survive.
He went on to talk about what our options would be if we did decide to go in for a termination. They could either induce labor, in which case I would deliver the baby like I would have delivered her at full term if things had turned out differently. Or they could do a Dilation and Evacuation (D&E), which was a modified D&C, modified to accommodate the fact that I was quite far along in my pregnancy. Some people, he said, preferred the labor induction because they felt that it was closer to the natural way and also because they wanted to see the baby. At the mention of getting to see the baby, both my husband and I teared up.
I asked about risks involved in the procedures. He informed us that with either procedure there was a small risk of bacterial infections, but I would be given antibiotics to counter that risk. With the D&E, I would have to make sure that the person doing the surgery was experienced in performing such procedures at a late stage in pregnancy, otherwise there was a possibility of damage to my uterus and other fertility related organs. That could impact my ability to get pregnant in the future. He emphasized that their biggest concern at that point was my health and my future pregnancies.
I asked about recovery times for each procedure. He said that it was usually only a couple of days for the physical recovery, but most women took about two weeks off, but that was more for the emotional recovery.
He explained that with a D&E, I would have to see the doctor a day before the actual procedure and he would use a certain substance to dilate my cervix. There would be no cutting up for the actual procedure, everything would happen through the cervix. The fetus would not come out in one piece with this procedure, which would make things difficult if we wanted a pathological analysis done on the fetus.
He also told us that there were only three surgeons in the entire state who did that kind of procedure at late stages of pregnancy. His office would arrange things for us if we decided to terminate via a D&E. He himself did similar procedures up to about seventeen or eighteen weeks into a pregnancy. But if we decided to go the labor induction route, they could do that at that very hospital for me, possibly as soon as the same or next day after we made our decision. Either way, the risks were very minimal and he and his staff would make sure that I got the best care and every precaution was taken to ensure my safety.
We asked him how long after a termination we should wait before trying to conceive another baby. The normal recommendation is to wait until two normal cycles have passed, he said.
We left the hospital that day with a completely unexpected load of information in our heads, heavy hearts, tears in our eyes and a very difficult decision to make.