We Didn't Know If They Would Both Survive: Our TTTS Story
Updated: Apr 28, 2020
Our story started in 2012, we found out we were expecting and were thrilled. But our previous pregnancy only had one ultrasound at 20 weeks, and I wanted one earlier. So at my first appointment, I told our doctor that I wasn't sure how far along we were, which meant we got to have an ultrasound at 8 weeks. That's when we found out we were having twins and were referred to an MFM in Saskatoon, Dr. Mytopher.
It took 4 weeks to get in, and TTTS was one of the first things she said they looked for. At 16 weeks she noticed we were starting to show symptoms of stage 1 TTTS. She told us every step of the way what was happening, and I started getting ultrasounds twice a week. Dr. Mytopher was calm, and we had never even heard of twin to twin transfusion syndrome, so we trusted her to do what was best for us. But at the same time, we felt isolated in our worry and fear since we didn't know who to reach out to with these feelings and thoughts. Our family was incredibly supportive, but it was brand new to them as well, so we all just did our normal routines, and hoped it was still ok at the next appointment.
Then at 19 weeks, things had progressed quickly, and we were stage 2, progressing to stage 3. Our doctor phoned us at 10 pm that evening saying that Dr. Greg Ryan wanted us in Toronto at Mt. Sinai the next day by noon. We honestly still felt overwhelmed, and trusted that they knew what we had to do. So we went and had our appointment with him. He was fantastic in explaining everything and telling that the TTTS had worsened. Our donor baby had less than 1cm of amniotic fluid, while our recipient had over 11cm and the additional blood flow was causing his heart to work extra hard. He explained the surgery to us, and all the options and the survival rates. If we did nothing, we had a 10% chance one of our babies would survive. If we had surgery, there was a 60% chance both babies would survive. So we did.
The staff at Mt. Sinai were amazing. They kept us informed, and they were all calm. We were terrified, alone in a different city. Their confidence helped us feel a little better in an unimaginable situation. During the surgery it was almost unbelievable, I could hear the connecting vessels being closed, I thought my hip was cracking or popping, just loud pops every now and then. I think the surgery took maybe 5-10 minutes, and then they took us on a "tour" of the inside of my uterus. We saw our twin boys at 19 weeks and 4 days pregnant. We saw their tiny fingers, little noses, cute toes. That night was scary because we didn't know if they'd both survive the surgery, and the next morning when we had our checkup and saw 2 heartbeats, and healthy amniotic levels, and our recipients heart becoming more regular, it was a huge relief.
After surgery, we joined SPOTTO (Saskatoon Parents of Twins and Triplets Organization) and met other families, and while TTTS was uncommon there, I did meet a couple families who had experienced it but had not gone for surgery. Since then, 6 years ago, I think I had met or spoken with 6 families who have had to go to Toronto for surgery. The average time to go into labour after surgery was approximately 12 weeks, and 11 weeks later we did. The boys were born at 30 weeks and 5 days and had a relatively uneventful NICU stay.
My boys, Johnny and Will, are now incredibly smart, active and funny 6-year-olds. They love sports, they love reading, and they love being twins. Every year I advocate awareness for TTTS and proper monitoring on Twin to Twin Transfusion Awareness Day and on the anniversary of our surgery. I know that our early ultrasound leading us to an early referral to Dr. Mytopher, and Dr. Ryan and his teams' expertise, are the only reason our boys are here today, and I appreciate everything they did so much.
Shared By: Julie Koroluk
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