Thursday, 16 November 2017

Our Dandy Walker diagnosis: Part 4 (The decision)

We met with the specialist again on Friday May 26th. We went in to get another ultrasound, but before she started, she asked us what we were thinking. We told her that we had decided on a termination. She had gotten the MRI back and it confirmed the diagnosis of Dandy Walker. She said we didn't have to do the ultrasound if we had made up our mind as it is just so hard to look at this sweet baby when we know we are terminating. She told us a little about the termination, and that it is done in Moncton or IWK. She told us she would try to get it booked as soon as possible. By then we really just wanted it done because it had been so hard having the baby move around all the time in my belly when I know that I wasn't going to be pregnant for long.

She explained that a specialist arrests the heart of the baby with a long needle similar to the amnio, then a day or two later I go into labour. I would go to labour and delivery just like any other woman in labour, though I would be eligible for more pain meds because there is no concern for the fetus's health. She recommended we book an autopsy so that we could get any information about the baby that might effect our decision to have future pregnancies. The law in New Brunswick says that the stillborn baby has to be transferred to a funeral home, where we can opt for a funeral or not, and we can opt for cremation or not. I hated all of it. I hated that we would have to show up at labour and delivery just like I had imagined, except not at all. I hated that I would have to give birth in the room beside another woman who was giving birth to a baby that was alive. I hated that they would probably ask me if I wanted to see the sweet baby after she was born, and I knew I wouldn't be able to look. I hated that afterwards, I would have to heal from the delivery with no baby. I hated that I would have to go to the funeral home to make the arrangements for our sweet angel baby. I wished that there was a way that I could just go to sleep and wake up and all that be done.

After that appointment she called us to tell us that IWK would be able to do it on the following Tuesday, and they would call on Monday to tell us what time. We proceeded to have the worst weekend ever. Its just such a terrible feeling to know that you aren't going to be pregnant anymore after 5 months of pregnancy. I knew that I would never want to get pregnant again and risk going through this again. We tried to convince ourselves that we would be ok as a family of three. We cried about all the things we felt like we were losing. We thought we would have a little baby at Christmas this year. We pictured future family vacations with the four of us. We had all this baby stuff accumulating in our closets from friends. We were having a third bedroom put in for the baby. I had been shopping at the little boutique downtown for the baby's high chair and change table.

(we tried to keep things normal for Cohen)

(my sister came down to be with Cohen a lot and sent him stuff in the mail)

We felt really solid about our decision in a lot of ways. Jon and I miraculously were on the same page about it the whole time. I can't imagine what would have happened to our marriage had we felt differently about medical terminations. It's not something I had ever even heard of, so there's no way I had an opinion about it until it was something I had to decide. I kept calling/emailing the genetic counsellor to verify stats and talk about different papers I was reading. The thing about Dandy Walker is that ultrasounds are relied upon for diagnosis, but the technology for ultrasounds was really, really poor even 15 years ago. So all studies before 2000 are useless. All the studies are retrospective, of course, and it can take years for a hospital to accumulate enough cases to actually do a study. Also, many fetuses diagnosed with Dandy Walker are terminated, so we don't get as much information about those cases. There is actually only one or two studies that exist that the genetic counsellor was even comfortable talking about due to the low quality of the other studies. Newer research is showing that there is potentially a connection between people with untreatable depression and/or debilitating migraines and Dandy Walker. But so much more research is needed. When we had made our termination decision, Jon contacted a group of doctors in Seattle who are trying to get more research about Dandy Walker done. We were going to send them all our scans and test results to add to the data they have. We wanted to try to find something positive out of all of this.

I kept thinking about how Dandy Walker is on a spectrum, and though they can't be sure of this, I felt like the amount of the vermis of the cerebellum that is missing must be connected to the degree of deficiency in function. And I had seen the scan of my baby's brain, and seen the huge black spot where the healthy vermis should be. I felt sure that our baby was going to have really huge developmental issues due to the lack of vermis. It was hard because through all this, the baby moved around like crazy in my belly. We learn that fetal movement is healthy, but in this case, the doctors told me that it meant nothing positive. Dandy Walker babies can move around a lot until suddenly they don't.

The weekend before the scheduled termination, I decided to tell one of my closest friends here, who has four kids. Until then, I had really only talked to my sister and one lady I barely knew about it, and I was feeling like I needed to talk to a friend. I didn't need or want any advice or opinions. I just wanted someone to listen. I was so scared to tell anyone, but she really surprised me by listening and crying and just being there for me.

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