Monday, 13 November 2017

Our Dandy Walker diagnosis: Part 2 (The amnio)

The next morning (Wednesday, May 11th) mom and I went to the amnio. I got Jon to cover my clinic, and Dad watched Cohen. I shed a few tears on the drive in with mom. We talked about how Jon and I were financially and emotionally able to raise a baby with special needs, and we talked about how that would probably not matter because the baby would probably just have a Blake's pouch cyst. I was so not scared about getting the amnio. I felt hyper focused on just getting the information about our baby. Jon and I had decided the day before that we would opt in for all testing because we wanted to be as informed as we could about our baby.

(this was a bump photo the week before the diagnosis)

We got there first thing in the morning before her regular patients were scheduled. The specialist did another ultrasound first. She confirmed her diagnosis of Dandy Walker from the scans she was getting of the brain. She had showed the scans to her colleague, and they both agreed that it was Dandy Walker. She even showed me the huge area that was just black on the scan that was not supposed to be there. It looked really dire. I could see the huge black hole on the scan with my own two eyes. I learned about the cerebellum, and how it is shaped like a barbell, and the centre part that is like a bridge is called the vermis, and it is super important for a bunch of involuntary and voluntary functions. Our baby had a vermis, but it was tiny, way thinner than it should be. There was a cyst pushing on it, making it small. She talked about how little we know about Dandy Walker, and how she had done some research the night before.

The Dandy Walker diagnosis meant that the baby might not survive a year. Some Dandy Walker babies die in utero. If the baby did survive, there would be lots of developmental issues, walking issues, breathing issues, cognitive issues, etc. The cerebellum is in the brainstem, and super important for so many functions of the brain. She said that termination was an option in this case, and something we should strongly consider. I was shocked. I didn't even realize that you could terminate pregnancies so far along (I was 20 weeks). She said she prefers to complete terminations before 24 weeks, which is the age of a fetus that can usually survive after birth.

She did the amnio, which involves a huge needle going in to my stomach and sucking out some amniotic fluid. It took her a few tries to get the angle she wanted since the last thing you want is to touch the baby with the needle. The amnio was painful and made me feel really dizzy, which she said is normal. I wanted to squeeze something, but the nurse was scrubbed in, so she said I could squeeze her stomach. So I squeezed her love handle while they put the needle in, and my mom backed into the little office beside the exam room. My mom had a really hard time with this appointment. She had been with me for the 12 week ultrasound, and was just really excited and involved in this pregnancy from the start. They took blood and told me Jon needed to give blood that very day so they could look at our chromosomes to see if the Dandy Walker was genetic in this instance. The doctors and nurses could not have been more kind and warm. I felt so taken care of, and like I was in such good hands.

I called Jon when we got to the car, and told him that he needed to go to the blood clinic on his lunch break. He was like, well I'm super busy, so maybe I'll go after work. So I told him the diagnosis, and that it was super important he go soon. Jon had to close our clinic because he couldn't stop crying. It was terrible. I can't even explain how it feels to know that your baby in your belly is either not going to make it or have huge challenges to just make it through childhood. After that we started researching Dandy Walker. There really is not a lot of information out there. We would find a lot of success stories that would end with them doing an MRI and realizing the baby actually only had a Blake's pouch cyst, which our baby definitely did not have.

We tried to stay as busy as possible in that first week that we were basically just waiting for test results. All I could think about was that the amnio results would show that either the baby was going to be healthy or not. Jon and I delayed any decision-making because we just thought the amnio would be the answer. We were told that the amnio would take three days to tell us about missing chromosomes, and another week or so before we would know all the details about the chromosomes and potential inherited mutations.

After the amnio and bloodwork was done, the doctor said I couldn't go back to work that day, but mom and I had facials booked for her birthday. The doctor said we could go to those, and it might be good to relax after all this. Those facials were probably the least relaxing thing ever. I spent the entire time just thinking about the diagnosis over and over, and trying to figure out how this happened. I wondered if a normal ultrasound technician would have picked the brain abnormality up. I wondered how this baby in my belly was doing right now. I wondered if I was going to have a miscarriage. That weekend we went to Moncton to try to keep our mind off things. There was nothing we could do until we got our test results back.

I know that a lot of people feel strongly about medical termination, and a lot of people think it is wrong. I became so scared of judgement, even before we had made our decision. Jon and I have a few friends and family who are very religious, and believe that terminating a pregnancy is wrong. I told Jon that I might want to tell people I miscarried if we decided on a termination. But then we talked and talked about it, and Jon said that our real friends would understand. If we lost friends over this, we would be fine. And if I was honest, maybe it would help another couple who were going through something similar. I truly believe that you cannot know what you would do in this situation unless you yourself are in the exact same situation.

Even though we were waiting for the test results, Jon and I slowly started considering the termination if the test results pointed to a short lifespan for our baby. We felt like we were this baby's parents, even though the baby was a 20.5 week fetus. And we wanted to do what was right for this baby. And we wanted to do what was right for Cohen and our family. These were the worst weeks of our lives for sure. We only told our close family what was happening, and I stopped telling people I was pregnant. I started wearing baggy clothes and I started to try to ignore the movements in my belly. I cried all the time, and so did Jon. At night we would sit on our couch and cry. It was terrible. 

No comments:

Post a Comment

Related Posts Plugin for WordPress, Blogger...