Ian and Ryan's Story - To Toronto and back.

Matthew and I arrived in Toronto early Thursday morning, took a taxi straight to Mount Sinai Hospital, and spent the day having an ultrasound. That was quite a bit of time on my back for me, I had thought the twins echoes were long… ouch. The doctor said the TTTS was stage 1 at this point so, we decided to wait on the surgery. (Stage 1 TTTS – There is an imbalance of amniotic fluid with a small amount (2cm or less) around the doner twin and a large amount (8cm or more) around the recipient twin. The amniotic fluid measurements represent the 5^th and 95^th percentiles respectively) and do another ultrasound the next day at Dr. Ryan’s clinic. (Dr. Greg Ryan is a Maternal-Fetal Medicine specialist and a Canadian expert in the field. Also, the first Doctor in Canada to perform TTTS Laser surgery (1998)) In Toronto the doctors called Repete Oli (oligohydramnios – which refers to the little to no amniotic fluid) and they called Ryan Poly (polyhydramnios – which refers to the large amount of amniotic fluid). A social worker at the hospital arranged for a complimentary night at a nearby hotel and then we went to go eat. I was starving!

Friday morning we packed up our stuff and headed to Dr. Ryan's clinic.  I was hungry, since I wasn't allowed to eat since midnight again in case they did the surgery that day. We spent the morning in the clinic having ultrasounds. 3 doctors (Dr. Ryan, Dr. Van Mieghem (Tim), and Dr. Keunen) were discussing what should be done and when. By early afternoon the doctors said the TTTS was now at stage 3, (Stage 3 – The imbalance of blood flow starts to affect the heart function in one or both babies. This is seen in abnormal blood flow in the umbilical cords or hearts of the twins) but still they thought we could wait for the surgery till after the weekend. This surgery was extra risky because both twins had a Velamentous cord insertion. Repete’s was very velamentous, this is how it was described in the ultrasound report; ‘Donor cord crosses over anterior placental surface and is very velamentous. Inserts in maternal right upper quadrant.’ Here is an explanation I found from Wikipedia: Velamentous cord insertion is an abnormal condition during pregnancy. Normally, the umbilical cord inserts into the middle of the placenta as it develops. In velamentous cord insertion, the umbilical cord inserts into the fetal membranes (choriamniotic membranes), then travels within the membranes to the placenta (between the amnion and the chorion). The exposed vessels are not protected by Wharton's jelly and hence are vulnerable to rupture.)  

This condition made the TTTS laser ablation surgery and the pregnancy even more risky, because if they entered the uterus in the wrong spot, they could hit and rupture a vessel supplying nutrients to Repete. They had to be sure where the blood vessels were before surgery and they weren’t sure.  Also, premature rupture of the Membranes (PROM) is always a significant risk with the TTTS surgery because during the surgery the doctor pokes a small hole in the amniotic sac to insert the tools used to cauterize the blood vessels on the placenta. Since we were only at 20 weeks, rupture of the membranes could kill the twins…they wouldn’t survive if they were born at this point. Because we had just found out we were having twins about 2 weeks before, we didn't know how long the babies had TTTS, so we couldn’t tell how quickly this was progressing. Also, very rarely TTTS doesn’t get worse and there is no need for surgery. We were hoping and praying we wouldn't need the surgery, even if it meant I would likely be admitted to hospital for the remainder of the pregnancy just to watch for signs of the TTTS progressing, and possibly be flown back out to Toronto at a few hours’ notice for the same surgery we were here for now. We were told Toronto is the only place in Canada that does TTTS Laser Ablation Surgery. The doctors asked us to wait during the weekend in Toronto, and on Monday they would do another ultrasound to see if there was any progression of the TTTS.

We left the hospital, walked to a coffee shop, and talked about what we would do in Toronto for the weekend. We called home since both Rebekah and my Mother-in-law, who were taking care of our kids the last few days, worked full time and only expected to take care of the kids till Saturday. We called some friends and arranged for our kids to stay at their homes till we got back instead. We then arranged for a place for us to stay the rest of the weekend in Toronto (Matthew’s relatives Phil and Roze and family).

After coffee and food, we headed to the mall to buy a few things. We hadn’t taken any Sunday clothes, or even very many clothes, since we hadn’t expected to stay the weekend, so we bought some. We had also only taken a carry-on duffle bag for our things and it was getting very heavy lugging it with us as we walked around Toronto, so we bought a rolling suitcase – what luxury! We walked to the ‘go train’ and bussed to a stop close to the house we would be staying at for the weekend. Matthew’s cousin Phil picked us up from there. Even under the circumstances, we had a relaxing weekend with family. On Sunday we worshipped with Bethel Canadian Reformed Church in Richmond Hill. The services were encouraging, and they were such a welcoming congregation.

Monday morning (a holiday), bright and early, Phil drove us into Toronto to the hospital where I had another long ultrasound. Around noon we were still unsure if we should move ahead with the surgery, or wait… We decided to wait in Toronto for one more day. We booked a night in the hotel we stayed at late the week before. We asked if they could give us a discount. They did, and they gave us a very nice room too! We settled into our room, and then walked around Toronto a bit and relaxed. It was such a beautiful day! Tuesday morning, during my ultrasound, the doctor said he saw a slight difference for the worse. Surgery was booked and I was admitted. Surgery was today! During the surgery, they would insert a shunt with three fiber optic strands into my uterus, on Pete’s side of the sac, (right into the sac beside the baby!) trying not to puncture the thin separating membrane between the twins. This was difficult since they couldn’t see clearly where the membrane or cords started or ended. They would use a laser to cauterize the blood vessels on the placenta that connected the twins. A huge risk was that Repete would only end up with a small portion of the placenta after the surgery and most often that results in the smaller twin dying because such a small portion may not provide the baby with enough nutrients to survive.

 We waited for an available operating room, and I was starving again. Finally in the early evening the OR was available and ready for us. The OR was cold! I had never been in an operating room before. Since the surgery was to be done while I was awake I was made very comfortable with SO MANY pillows and warm blankets! Ahhh so comfy! I was told NOT to move at all! I was given a little general anesthesia through an IV, but only enough so I was relaxed; I could still feel everything. Matthew was allowed in the OR, I was so relieved! They put some local anesthesia on the part of my belly they were going to cut for the shunt and fiber optic strands. Dr. Keunen did the surgery, he changed the entry point last minute, and then cut. Ouch! I hadn’t expected it to hurt, but once the initial cut was done it no longer hurt. They told us to put on special glasses (they were using a laser after all). They inserted a tiny sheath, and added some fluid to the sac so they had more room to move around. Then through that tiny sheath they inserted the fiber optic strands, one for the eye of the camera, one for the laser and one for a light. Using an ultrasound machine and a camera to guide them they maneuvered around inside my womb. The medical team gave Matthew and me our own screen so we could watch the surgery, which was so neat! Not too many people get to see a video of their unborn children. We could see our babies as clearly as if we ourselves were taking the video! The amniotic fluid was cloudier than I expected. We prayed as we watched the doctors count the connecting blood vessels twice, and then started cauterizing each one with the laser. Pop. Pop. Pop. I can’t recall exactly how many blood vessels there were, around 11. When they were done with the laser they counted again twice, then we took a quick look at Pete, such small perfect fingers, eyes, even eyebrows already, and yup, he was a boy! We couldn’t see Repete since they didn’t want to get too close to the thin separating membrane. They removed quite a bit of amniotic fluid (Pete had way too much), then glued and taped me up. No stitches, just tape and glue. I had expected some fluid to leak out of the incision or something, but nope, it just sealed itself. Cool! So far this was a successful surgery, both babies were still alive, the thin separating membrane was still intact, no big surprises. I was wheeled out of the OR.

Left – a picture of what happens during surgery. Top right – size of the tools. Bottom right – the OR

Once in my room I asked quite a few times if I could have something to eat, and finally I convinced my nurse to let me eat the apple and drink the orange juice I had put in my purse for after the surgery – I had expected it to be late and that it would be hard to find food at that hour. Matthew was allowed to stay the night in the hospital as well.  

The next morning we slowly walked over to the room where the TTTS team does their ultrasounds. We were praying that both boys had survived the night. We were so relieved when we saw those two tiny heartbeats on the screen! Yay! Although the doctor said he saw a difference in the twins’ heartbeats, he explained that it sometimes takes a few days for the babies to adjust to the different blood flow. Repete had more amniotic fluid which meant he was peeing more, so it looked like this surgery had done more good than harm!

We went back to our room and packed up. While the doctor signed the discharge papers Matthew’s cousin Brian popped by for a quick visit. The doctor told us to stay in Toronto for the night yet, and come for one last ultrasound in the morning. We left the hospital and checked into the hotel we had previously stayed at. They gave us a discount once again…we were so thankful, since hotels in downtown Toronto aren’t cheap! We slept, I updated the blog, had supper, relaxed, and slept some more. In the morning we walked to the hospital, (after breakfast mmm, food! In the morning too yet!) This time we didn’t have to drag our suitcase along since we expected to go back to the hotel later. I had one last ultrasound, and saw that they were both still alive! We walked back to the hotel, called our social worker (who then booked our return flights), arranged for a taxi to the airport, packed up and headed home!

 While we were in the Toronto airport waiting for our flight home we looked in a few stores and found 2 cute black teddy bears with red Toronto sweaters. We bought them. They were perfect since with our second child we had started the tradition of buying teddies for every baby (usually while I was still pregnant). I loved that the twins’ teddies were bought in Toronto where the amazing TTTS surgery happened. The flight home was much more comfortable than the way there, since my tummy was actually smaller from having less amniotic fluid. Once we landed, Matthew’s parents picked us up from the airport, took us out for supper, and finally they dropped us off at home. We dumped our suitcases inside and went to go pick up our kids, we had missed them SO much!