I think it was Tuesday, June 23rd that I got the call about some early amniocentesis results. I was surprised that it was so early, since the amnio takes 7-10 days for results, but they can get some early preliminary results if insurance allows, called the FSH test.
The doctor who called me was the ultrasound doctor who originally talked me out of the amniocentesis, which was weird. I didn't like her very much, and that made the whole conversation very cold.
She told me that our baby had Triploidy, which is an extra third set of the X chromosome. This condition is fatal, and "incompatible with life" as she put it. Most cases of triploidy miscarry in the first trimester, and if they don't they will be stillborn. The longest record of a child surviving with triploidy is 10 months post delivery. (I'm not sure if this 100% true, this is just the stats she gave me.)
She said all the abnormal tests circle back to this diagnosis. The spina bifida was actually just a symptom of the triploidy.
Things looked bleak.
So make the situation worse, the triploidy was causing issues with the placenta, which was most likely causing my blood pressure to be high. It could also cause thyroid issues, etc.
So I could terminate the pregnancy, or I could continue to carry her until she passed on her own, or give birth and just wait. I don't think they really do much to save a baby with triplody, or at least that was the impression I got, since the diagnosis seemed so hopeless. However, the longer I carried her,t he sicker I would get.
I remember getting this call at work, and taking notes like it was just another call. My game face was getting pretty solid I guess. Or just so used to being the recipient of bad news maybe?
Sunday, July 12, 2015
Saturday, July 11, 2015
So what are my options?
This topic could be sensitive to some, or TMI.
About an hour after I spoke with the doctor that Tuesday, I got a phone call from the genetic counselor. She went into more detail about the triploidy, my risks if i continued the pregnancy, and what my options were if I decided to terminate.
This was the first time the idea of termination ever slightly seemed like a possibility. It was such a scary thought. Since I felt comfortable talking to the genetic counselor (since we were practically best buds now!) I asked her about how the termination would go. She told me there were two options when you're as far along as I am. I'm almost 20 weeks at this point.
The first option is to terminate the pregnancy, induce labor, deliver the baby stillborn, and then they can give you the time to spend with your stillborn baby, take pictures, potentially have a service, cremation, etc. However, it's possible to be in labor for hours or days even before you actually deliver.
The second option is a D & E (Dilation & Evacuation). You're put under anesthesia, and they remove the pregnancy and the placenta.
Well, both sounded pretty awful, for different reasons. I never thought I'd be in the position to have to make such a decision, and I still hoped I wouldn't. I hoped for a miracle, or I even hoped that she would pass naturally and peacefully before I had to do something so drastic.
Legally, I had about 3 weeks left to make a decision, and I didn't even have the full amnio results yet.
About an hour after I spoke with the doctor that Tuesday, I got a phone call from the genetic counselor. She went into more detail about the triploidy, my risks if i continued the pregnancy, and what my options were if I decided to terminate.
This was the first time the idea of termination ever slightly seemed like a possibility. It was such a scary thought. Since I felt comfortable talking to the genetic counselor (since we were practically best buds now!) I asked her about how the termination would go. She told me there were two options when you're as far along as I am. I'm almost 20 weeks at this point.
The first option is to terminate the pregnancy, induce labor, deliver the baby stillborn, and then they can give you the time to spend with your stillborn baby, take pictures, potentially have a service, cremation, etc. However, it's possible to be in labor for hours or days even before you actually deliver.
The second option is a D & E (Dilation & Evacuation). You're put under anesthesia, and they remove the pregnancy and the placenta.
Well, both sounded pretty awful, for different reasons. I never thought I'd be in the position to have to make such a decision, and I still hoped I wouldn't. I hoped for a miracle, or I even hoped that she would pass naturally and peacefully before I had to do something so drastic.
Legally, I had about 3 weeks left to make a decision, and I didn't even have the full amnio results yet.
Friday, July 10, 2015
Later that Tuesday...
My OB called me a little later in the day on Tuesday, after I spoke to the doctor and the genetic counselor. She asked me if I had any thoughts on what I wanted to do next, after all the info I'd been given. I asked her all the possible questions I could.
Could the early amnio results be wrong? It's not likely, due to all the results we've previously gotten. The high HGC, the high AFP, the abnormal ultrasound, the hypertension I was having, and the FSH results.
Why would the NIPT not have caught this major chromosomal abnormality? Why did that test say everything was fine? The NIPT really only looks for the extra specific chromosomes, such as the 21st chromosome (Down Syndrome).
I'm sure there was more, it was a long day. She told me that she was referring me to a hospital in Philadelphia, where they would do pregnancy terminations. There was a doctor there that she wanted me to meet with and get evaluated, and she would give me a better idea of what my options really were.
I called her office around lunchtime to make an appointment. Her nurse coordinator was the sweetest woman ever, and really took the time to explain everything to me, offered to listen, and talked about her own experiences with loss. She made an appointment for me to come in that Friday at noon, so I could meet with the doctor. I had all my billions of doctors fax her over all my records so far, so we could go over them Friday.
She called me again later that night, around 7 pm. She told me that the doctor looked over my records that had been faxed, and she wasn't comfortable waiting until Friday to see me. The hypertension was a serious reg flag for preeclampsia, and the situation could really take a turn for the worse really quickly. She urged me to come in the next day.
Could the early amnio results be wrong? It's not likely, due to all the results we've previously gotten. The high HGC, the high AFP, the abnormal ultrasound, the hypertension I was having, and the FSH results.
Why would the NIPT not have caught this major chromosomal abnormality? Why did that test say everything was fine? The NIPT really only looks for the extra specific chromosomes, such as the 21st chromosome (Down Syndrome).
I'm sure there was more, it was a long day. She told me that she was referring me to a hospital in Philadelphia, where they would do pregnancy terminations. There was a doctor there that she wanted me to meet with and get evaluated, and she would give me a better idea of what my options really were.
I called her office around lunchtime to make an appointment. Her nurse coordinator was the sweetest woman ever, and really took the time to explain everything to me, offered to listen, and talked about her own experiences with loss. She made an appointment for me to come in that Friday at noon, so I could meet with the doctor. I had all my billions of doctors fax her over all my records so far, so we could go over them Friday.
She called me again later that night, around 7 pm. She told me that the doctor looked over my records that had been faxed, and she wasn't comfortable waiting until Friday to see me. The hypertension was a serious reg flag for preeclampsia, and the situation could really take a turn for the worse really quickly. She urged me to come in the next day.
Tuesday, July 7, 2015
Admitted to the hospital
I drove down to the hospital in Philly the next day, Wednesday June 24th. I was 20 weeks pregnant. Matt met me there, and we waited to see the doctor.
We sat in the waiting room, which was full of pregnant women. I can't be certain, but at the time they all seemed like perfectly blissful, healthy pregnant women without a care in the world. A girl a few seats away had her newborn daughter with her, and was talking to the other women in the waiting room about how easy her delivery was. I tuned out as well as I could, but man that felt so unfair.
They brought us back and did an ultrasound again. I laid back and held Matt's hand, held back tears, and secretly hoped that there wasn't a heartbeat. But there it was, healthy and strong. I think the tech tried to hide it from me too. There was no grand announcement of the heartbeat this time, and she told me that if I heard anything, it was just the sound of the blood flowing through the umbilical cord.
It broke my heart..
The doctor looked at the ultrasound, confirmed the findings everyone else had, and tried to get a look at the placenta as well. Afterwards, we sat down and she went over the different processes for termination. I asked about carrying her until she passed on her own. Thinking about that now, it sounds noble, but waking up every day to wait for your baby to die inside you just sounds awful. I wouldn't even realize most likely, since I still hadn't felt her move. The doctor really advised against this anyway, because of my early preeclampsia symptoms. She told me that if I proceeded with the pregnancy, I would continue to get very sick.
So I agreed to terminate the pregnancy. I felt backed into a corner, but I also felt like it wasn't my decision anymore. If I chose to carry, I could get really sick. My baby didn't have a chance either way. I didn't even think of my own health until now, but I knew I wanted another shot at a healthy pregnancy, and I didn't want to jeopardize that. So I was scheduled to come in the next week for the procedure. It was the soonest she was able to do it with backup that was necessary.
(FYI, summer is not a good time to have any kind of urgent care done, doctors go on vacations like crazy.)
She went on to check my vitals, and I guess she didn't like my blood pressure, it must have been pretty high. Why would my blood pressure be high? I'm only sitting at the doctor's, getting the worse news ever, that my baby has no chance, and that I'm getting sicker by the minute! Oy. Anyway, she spoke with her colleague in the hallway, and came back in to tell me that she recommended that I be hospitalized right away. The way my blood pressure was, I was at risk for stroke, and she didn't feel confident that I would be okay until next week.
So I was scheduled for surgery the very next day. I think that's when Matt and I actually realized that this was serious. I was scared.
So I agreed to terminate the pregnancy. I felt backed into a corner, but I also felt like it wasn't my decision anymore. If I chose to carry, I could get really sick. My baby didn't have a chance either way. I didn't even think of my own health until now, but I knew I wanted another shot at a healthy pregnancy, and I didn't want to jeopardize that. So I was scheduled to come in the next week for the procedure. It was the soonest she was able to do it with backup that was necessary.
(FYI, summer is not a good time to have any kind of urgent care done, doctors go on vacations like crazy.)
She went on to check my vitals, and I guess she didn't like my blood pressure, it must have been pretty high. Why would my blood pressure be high? I'm only sitting at the doctor's, getting the worse news ever, that my baby has no chance, and that I'm getting sicker by the minute! Oy. Anyway, she spoke with her colleague in the hallway, and came back in to tell me that she recommended that I be hospitalized right away. The way my blood pressure was, I was at risk for stroke, and she didn't feel confident that I would be okay until next week.
So I was scheduled for surgery the very next day. I think that's when Matt and I actually realized that this was serious. I was scared.
Monday, July 6, 2015
Choosing a D & E
I ended up choosing a D & E for many reasons. I hope I never regret this decision, but I'm confident it was best for me.
This is my first pregnancy. If I chose to be induced and deliver, I could be in labor for hours, or days. I didn't want this to be my first experience with delivery. I was already so scared to go through a pregnancy again, knowing all the tests I would have to take again, knowing the results could go wrong again. If I could, I wanted this sadness of a pregnancy to be as different as possible form any future healthy pregnancies.
I also don't know if my doctor would have allowed me to go this route, with my blood pressure as high as it was. I was scared.
I know many women choose to see and hold the baby, take pictures, etc. I didn't think I could handle seeing her like that. I was happy with my little ultrasounds, and I wanted to remember her just like that, before all the scary diagnoses. <3
Sometimes this decision makes me feel a little less strong, like I took the easy road. But I remind myself that I was already on such a hard road long before this. I was making the hardest decision already, among many other hard decisions. I did what was safest for myself, and my husband.
I was prepared to do anything to make my daughter's life the best it could be if I could. But there was nothing more I could do for her.
This is my first pregnancy. If I chose to be induced and deliver, I could be in labor for hours, or days. I didn't want this to be my first experience with delivery. I was already so scared to go through a pregnancy again, knowing all the tests I would have to take again, knowing the results could go wrong again. If I could, I wanted this sadness of a pregnancy to be as different as possible form any future healthy pregnancies.
I also don't know if my doctor would have allowed me to go this route, with my blood pressure as high as it was. I was scared.
I know many women choose to see and hold the baby, take pictures, etc. I didn't think I could handle seeing her like that. I was happy with my little ultrasounds, and I wanted to remember her just like that, before all the scary diagnoses. <3
Sometimes this decision makes me feel a little less strong, like I took the easy road. But I remind myself that I was already on such a hard road long before this. I was making the hardest decision already, among many other hard decisions. I did what was safest for myself, and my husband.
I was prepared to do anything to make my daughter's life the best it could be if I could. But there was nothing more I could do for her.
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