Saturday, 18 November 2017

Our Dandy Walker diagnosis: Part 5 (The termination)

So the appointment with IWK was made for 1 pm on Tuesday May 30th. This is the appointment where they inject the baby with something to stop their heart instantly. Then the next day you go back to your community hospital to deliver the stillborn. We dropped Cohen off at my parent's in the morning and made the drive to IWK. We had lots of podcasts downloaded to try to keep ourselves distracted. We were both exhausted from not sleeping lately. We cried and cried listening to podcasts on the 4 hour drive.

We got to the waiting room maybe 30 minutes early, where we took a number and waited with a few other ladies who were super pregnant. It was clear we were the only ones there for a termination. We were just crying and looking at pictures of Cohen. After a while, we got called in to an ultrasound room where a 3rd year ultrasound student told us she was going to do the full scan. She was like, do you know why you are here? We were like, yes. She was like, ok why? And we told her we were here because our baby had Dandy Walker and we were terminating. She asked me if I took any drugs during the pregnancy, when my last period was, etc. I was ready to lose it. It felt like she hadn't even peeked at our chart. Asking a mom who is about to terminate if she ever did drugs in the pregnancy seems completely insane and insensitive to me. Right before she started the ultrasound Jon asked her if it was necessary for us to have the full ultrasound since we were terminating. She was like, I can ask. So we waited for a bit, then an administrator type of person came in and told is there had been a mistake and we were in the wrong area. Jon and I were feeling really raw and upset, so the hospital mistaking us for people who weren't about to do the worst thing ever was not really cool with is.

The admin person took us to a private waiting room with a big couch and a few chairs. It felt so much more appropriate for us to be on our own, away from the happy pregnant couples. We waited there for an hour, and then a doctor came in to talk to us. She said that she had just been pulled in on this case, but she had looked through our file. She said they would be confirming the other fetal maternal specialist's diagnosis, then she explained a little more about the procedure, and how they were going to try to put the medicine in at the insertion of the placenta so that the baby would never feel a poke. She said it was a more difficult technique, but nicer for the baby. It would take longer because they would have to wait for the baby to move in the right way for them to be able to access the right insertion point. She told us to expect lots of emotions. She asked us how we were feeling about this all today. I told her that I kept imagining that the doctors here would say that actually the baby is fine and we didn't have to do this. She said of course that would not happen, but it is so normal to feel like that.

Then the other doctor, who was super experienced and much older, came in and reiterated what she said, and then they took us to another procedure room. The older doctor told us that the medicine they use is a toxin, and though the amount is not enough to stop my heart, it is possible that they will accidentally inject it into the vein instead of the artery, and I will get the toxin in my system. If that happened I would have an IV, so they could quickly fix it, but I should warn them if I get a bad taste in my mouth, because that would be a sign that I received the toxin. The nurse in this new larger, darker room introduced herself and told us she would be with us the whole time and we could ask her anything. She was so kind and warm and I felt a tiny bit better and more taken care of.

The first, younger doctor started by doing a full scan. She was sure to ask us if we wanted the screens pointed away from us so we wouldn't have to look at our sweet baby while she did the ultrasound. While she was doing the ultrasound, she tried to make small talk. She was an OBGYN but was about to be completing her training for fetal maternal medicine. She talked about how the older more experienced doctor was really good, and she talked about how it's nice that Jon and I just bought a practice together. She was really nice. I was dreading the moment when she got to the brain, because I knew she would spend a lot of time looking at the problem, and it just made my heart break to think about our baby's cyst where the cerebellum should be. Just as I suspected, she grew quiet and started really taking a lot of pictures when she got to the brain. She was doing it for a long time, and the baby was moving around like crazy. Eventually she started scanning the area where they would do the injection.

After what felt like a long time, but was probably only 20 minutes of her scanning, the other doctor came in. She kind of quietly talked to him by the computer on the other side of the room for a few minutes, then he came over to start his own ultrasound. He started telling the younger doctor where the ideal insertion for he medicine would be, and was explaining that the baby was not in a great position right then, so they would have to wait for a bit. He said that something was "eyeballing normal." When he said that, my heart jumped. I looked at him and said, "eyeballing normal?" He was like, oh, no, I'm just showing certain things to my colleague. He said that it is their procedure to get a confirmation from every fetal maternal specialist in the hospital when they do a medical termination. He said there happened to be a third one working that day, so they had to go get confirmation from them too by showing the other doctor these scans. He said I would get an IV while they were gone.

The nurse came over and tried over and over to get the IV. I was so upset. I felt like they were never ever going to get the IV, and we would have to delay this nightmare by one more day just because of the IV. She got another nurse to come try to get the IV, and she couldn't get it either. They said it was because I hadn't been sleeping or eating right, and I was so anxious that my veins were almost nonexistent. They made me squeeze as hard as I could while they wrapped my arm in a warm towel. A third nurse came who was experienced doing IVs in babies, and she was able to finally get it after a few tries. It was super painful, and I was crying the whole time. The nurses were super apologetic about the IV thing, and covered me in a warm blanket. The nurses then told us they would leave us alone for a bit so we could have a chance to say goodbye to the baby on our own. When they left I just kept saying over and over to Jon that I didn't want to do this. Jon was crying and kissing my belly and telling the baby over and over how much he loved her. After a long time, we heard the doctors outside our door talking. They would open the door for a second, then close it again, as if they were trying to end a conversation before they came in.

Finally, the younger doctor came in. She sat me up a little and said she needed to talk to us. She said that they had reviewed the images with the third specialist and also the radiologist, and the baby's brain was fine. We were like, WHAT??? She said again, the baby's brain is fine. The older doctor came in. He was like, yes, for whatever reason, our MRI was not reviewed by their radiologist until right then. He said all four doctors all agreed that the brain looked perfectly normal. I was like, ok, so maybe it's a Blake's pouch cyst instead of Dandy Walker? He said, no, this baby's brain is completely normal. He said that he thought the radiologist who looked at our MRI in Fredericton was probably not used to looking at fetal brains. He said fetal brains do look significantly different than even baby and children's brains. He said that he can see how the other specialist could have forced an image of a cyst, because I am so thin, that you can actually create a shadow when doing the ultrasound on me.

(we went for supper to celebrate right after) 

Jon and I were crying and hugging and basically freaking out. It was the best moment of our lives. Period. I cry now just thinking about it. As I write this, our baby is sitting right beside me smiling at me. I can't even believe how lucky we got. The doctor was like, so I guess we are not performing a termination today, so let's take out that IV. But Jon and I were crying and hugging so much that the nurse couldn't even get at my IV. So all the nurses and doctors all left the room and said they would be back in a few minutes. Jon and I just kept looking at each other and crying and feeling my stomach. The baby was so active.

When the doctors came back in, we needed them to basically repeat the whole thing because we were in shock. The younger doctor said that in all her years as an OBGYN, she had never reversed a diagnosis. The nurses said that all the staff were crying, even the receptionist, because everyone was so happy for us. The older doctor said that we could go home and enjoy the rest of the pregnancy, and we would not have to have any more ultrasounds. The doctors left and one of the nurses said she thought this might be a good time to take a picture of this baby to remember this moment. She quickly took the picture above. Jon and I looked at each other and decided we wanted to know the sex of the baby. We had been envisioning me giving birth to a stillborn little girl. The nurse quickly showed us that the baby was in fact a boy. We were so thrilled. After the nurse had let us go and we were walking down the hallway, Jon was like, I have to see that doctor one more time. So we went back and Jon thanked the doctor through tears for saving our baby.

We were freaking out the whole time we took the elevator down to the lobby of the hospital. Once we were outside we tried to call Cohen, but there was no answer from my mom, so I called my sister. I told her we were having a boy. She was so confused. She made me tell her the whole story a few times before she could accept the craziness of it. I called my mom again and asked to talk to Cohen. I told him he was going to have a baby brother. Mom thought I might be sedated, and was honestly worried that I was confused about what had just happened. Those were the best phone calls I have ever made. Jon called his family, and I had my sister call the one friend who knew what was happening. My sister googled "lucky" and found that Felix means lucky, so we started calling the baby Felix right away. Jon and I were exhausted and thrilled and decided to stay the night in Halifax to get the first good sleep we had had in a few weeks.

I wish I could say that was the end of our story...

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