Monday, 20 November 2017

Our Dandy Walker diagnosis: Part 6 (The aftermath)

I am still writing about our whole Dandy Walker situation, mostly because I am hoping it will be therapeutic for me. Jon and I also hope that someone out there might be helped by our story a tiny bit, even if it's just to encourage everyone to get a second opinion when you get a devastating diagnosis.

Part 1
Part 2
Part 3
Part 4
Part 5

The day after our trip to the IWK, Jon and I returned to work, where I told our staff why we had randomly been gone a lot the past few weeks with no notice, and why they kept catching us crying in our office or our car. Minutes after we got to work, the specialist from Fredericton called me. She was shocked, upset, apologizing. I was still riding a huge high, and I was just like, don't even worry about it! It's all good! We are having a baby!!! I felt like I had just found out I was pregnant in a lot of ways. She was like, ok, well, I'd still like to see you soon because this is basically unprecedented. She said the IWK specialist had called her that morning to tell her the news, but she didn't have the chart notes so she didn't have the details. I was so happy, I agreed to everything she said.

Later that day, Jon flew to Toronto for a four-day course. I basically insisted he go, since I figured we were all good, since we were having a baby! I was still super-exhausted and also 5 months pregnant, so I opted for Cohen and I to stay with my parents while Jon was gone. The first night we were there, I couldn't sleep. I kept replaying the events in my head over and over. We almost aborted a perfectly healthy baby!!! How could we have done that? How did this happen? How did three doctors at our local hospital get it wrong? What if we had booked the termination in Moncton instead of at the IWK? Would they have been so thorough? I was a mess. I couldn't stop crying for two days. I called my aunt and talked to her for a long time. I called a dentist friend who is not in my normal circle of friends, just to vent.

I was mad. I started to feel so angry at the doctor who made the initial diagnosis. Her receptionist called me a day or two later to book an ultrasound. I was like, wait. The IWK specialist told us we are done with ultrasounds. The receptionist was like, well we are booking you for whatever time on whatever day. It was a day that I couldn't make it/had to work/couldn't get a babysitter. She was like, well we are fitting you in special at the doctor's request. And I lost it. I told her I deserved some special consideration because the doctor had made such a huge mistake that almost cost me my baby's life. I told her I wanted them to work around my schedule, and anyway, I was done with their ultrasounds. It was not pretty and I am not proud. I told her not to call me, that I would call her when we were ready to see the doctor again.

The next week I showed up at my family doctor's office. I was like, I don't have an appointment, and I don't even know what to do, but I think I need an appointment because I am keeping the baby that was supposed to be terminated. The receptionist told me to sit down, that the doctor would see me right away. I think she could see the crazy in my eyes. I told my doctor how mad I was feeling, and how I couldn't stop crying. He was awesome, and referred me to a therapist who specialized in maternal issues. She was fully booked but got me a few days later.

Talking to a therapist was the best. I had never been to one, and had no idea what to expect, but it was really beneficial for me for sure. I ended up saying the thing that I didn't even realize I felt: what if something terrible is going to happen now to balance out this amazing thing? I know that doesn't make sense, but I was so scared that I was someone destined to have a tragedy in my pregnancy, and even though I dodged one tragedy, another one was coming my way. After that one therapy session, I was able to curb my crying to only a few times daily.

(at a hotel during a work trip)

Meanwhile, the specialist's office was calling me daily and I was ignoring. I couldn't face them. Finally we decided we could handle it, so I answered. The doctor herself called this time, and told me we could come for an ultrasound anytime at all, and she would rearrange her schedule. And she would have another specialist with her because she didn't expect us to trust her now. She said she had some hard nights since our IWK appointment, and she just did not understand how her images could have been so wrong. She said that as far as she is concerned, the baby has Dandy Walker, because all the images she had seen all confirmed that. Hospitals don't share their ultrasound images here, so she never did see the images from the IWK. She wanted us to come in so we could talk and also because she still wanted us to be prepared for a possible Dandy Walker outcome. She said that I would likely need a c-section since the head would be enlarged, and would likely have to have the baby at 37 weeks or earlier due to the enlarged head.

(beach time)

Jon and I finally booked the appointment with her for Friday, June 16th. Jon's dad came over from PEI to watch Cohen so we could go to this appointment. When we got there, Jon told her he did not want an ultrasound. She really pushed it, because she really felt that we should be prepared for a baby with Dandy Walker. She was appropriately emotional and really kind. All three of us cried. She laid out our entire chart (it was big), and left us alone so we could read through it. I didn't look at a single thing. Jon read every page. The doctor returned, and encouraged us to go to Mount Sinai in Toronto for a second opinion. She said she could get us in quickly, and they would do their own diagnosis, and they could complete any treatment we decided on (aka termination). I told her we were done with considering termination, and anyway, we were past the 24 week mark. She said that actually we could terminate all the way up to the delivery for a medical reason. Shocking. I felt so incredibly different about the baby at 25 weeks compared to 22 weeks when we had decided to terminate. Now, I felt more pregnant. And also, I believed that if four doctors from IWK had said the baby's brain was normal, than the abnormality must be on the more mild end of the spectrum. We could handle a mild Dandy Walker case. We ended this appointment with us telling her we would call her if we decided we wanted to go to Toronto or if we wanted another ultrasound. She felt strongly that I should have another ultrasound, if only for my own health, because it would be risky to go into natural labour if the baby had Dandy Walker.

We spent the next month and a half in a kind of limbo. We honestly preferred to be in this limbo than know for sure that our baby had Dandy Walker. We figured that if the baby had it, we would deal with it when he was born. We were for sure done with considering terminating. We figured that if the baby had Dandy Walker, he wouldn't start to need all the things he would need right away when he was born. I started reading about mild Dandy Walker cases. Many kids need multiple surgeries to have shunts placed. Many had extremely poor eyesight and hearing so needed aids and special glasses. Many needed walkers. Special classes, tutors. Physiotherapy. Speech therapy. Medications. All that stuff was totally doable in our minds. There were still so many unknowns.

(summertime bath time best time)

On Friday, July 28th, we finally went back to the hospital for another ultrasound. I was sick about this appointment. Again, I was dreading the moment that the doctor starts scanning the brain. She started her scan, and told us the baby was growing properly. She got to the brain, and said it was really iffy. She could see something cystic, but it looked better this time. So she got the other, more experienced specialist in to have a look with her. The other specialist took some time to scan the cerebellum. She said she would consider this cerebellum completely normal. Jon was like, so how would this happen? Is your ultrasound machine different than the one at IWK? She said, no, they are the same, but ultrasounds are very user-sensitive. And any discrepancies or errors are completely due to the experience of the user. She said that in her opinion, we were having a totally normal pregnancy. The first specialist said she would like to keep following the pregnancy, doing an ultrasound every week or two to monitor the baby. We said no. We were done.

We finally felt like the nightmare was over. I was 32 weeks pregnant, and I once again felt like I had just found out I was pregnant. That afternoon I met with my beloved ex-coworkers for my first of three (three!!) baby showers. I was ready to celebrate this baby. I was also sooo done with appointments. I still went to the normal OBGYN a few more times, but I refused a few routine appointments. I felt so distrustful of doctors and the whole system. I still do in a lot of ways.

Note: The few pictures in this post are from that month and a half we spent in limbo. We didn't know if we would be having a healthy baby or not, or even what healthy means. I felt happy to be pregnant, but I also didn't want to shout it from the rooftops. There are no deliberate bump photos from this time, just pictures that happened to show me pregnant. I feel like I was robbed of an entire trimester of my pregnancy. It sounds crazy to say that since I ended up with a healthy happy baby. But I swear, I lost years off my life from this whole thing. It was horrible, stressful, the worst. I still think about it every day, and Jon and I acknowledge it to each other all the time when we look at our precious, precious Will. My sister and my parents are still a little shook up. And we are so grateful for our sweet precious little guy. 

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