I’m warning you now…this will make you tear up like crazy! Consider yourselves clearly warned – here we go:
My husband, Cameron, was gone for two months with the Alaska Air National Guard. We found out we were expecting twins just a few weeks before the New Year in December 2008 at our first ultra sound(u/s) at 18 weeks. We were in shock, fear and excitement!!!
We knew they were identical boys and not Siamese. However, the lovely military docs weren’t sure if they shared a placenta. Cameron was deploying to fly missions in the war just a couple weeks after our news and the doctors wanted us closer to care. Thankfully we had family in the Seattle/Tacoma area and they were willing to work with the insurance to get Braden & I there.
Cameron left for the war and I kept on going. I loaded up our 21 month old, Braden to head to Seattle. That is when we were first diagnosed with TTTS and we were further along then what the doctor wanted for us. Just a few days after this I had horrible pains and was airlifted off Anderson Island, where I was staying with my mother in law. I got to Madigan and they said it was just ‘normal’ and they ran all the tests – everything seemed okay but then we were quickly flown to University of California at San Francisco (UCSF) where they did more u/s. Fetal Echocardiograms were done all day on the 13th of January 2009. Our boys were at Stage II going to Stage III rapidly. I was given three options; 1-just let it be, 2-surgery, 3-termination of one/both. Since Cam was gone I made the decision for surgery by myself. I tried and tried to get in touch with him through the emergency channels with the military but no luck. I was in laser surgery, the same day. I had nine pounds of fluid removed. I was awake during all of it, watching everyone at work and seeing our boys in utero. Cameron was happy to hear things were going okay but he was still skeptical about everything. I finally got to talk to him about four hours after the surgery. The surgery went well but I had to stay in hospital two days after because they couldn’t find the bladder on one of our boys. Finally they found it and I went back to our temporary home in Tacoma area.
Thank goodness for my amazing in-laws. I was on bed rest and everyone was taking care of not only me but Braden too. We had weekly u/s at Madigan with Dr Pates and a week into it things were getting worse with our boys. Our doctor was wonderful because he gave me the facts and what ifs we needed. He even went as far as reaching Cameron overseas to explain everything to him too.
At this point our doctor wanted us to go back to UCSF to do Fetal MRI, something that was rare in 2009. I told Cameron he needed to come home. The Air Guard got him “home” after a lot of problems and he met me in Seattle to fly to San Francisco together. We arrived the 10th of February and the next day we had eight hours of MRIs
As we were leaving we got a call in the parking garage. The doctors told us that both boys had severe issues. Their biggest concern was their brain development. They believed TTTS was already past Stage III and onwards to IV. They told us to come in the next day and talk about options; options that no family should have to discuss.
We were absolutely devastated because we knew what the answer would be. We had talked about it, hoped for only the best and planned for the worse. We had so many folks hoping and praying for us too. Our babies were at 26 weeks 3 days now.
We got to meet with the top directors of each area, including psychology and bereavement. It was horrible. We sat around a small round table. I was crying. Cameron was crying and little Braden was right there coloring. The top physicians were amazing during our time of discussion knowing what we were going to do. Even they had tears in their eyes because they really believed they had been successful with the surgery back in January. We had to fly to Beverly Hills CA to terminate, this was our decision and no other.
I was extremely sick the night before. I couldn’t sleep, talking with Cameron, crying and just wanting this hellish nightmare to be over. At one point Cameron even said if you want to keep them we will and we’ll figure it out together. I knew I didn’t want that. We had one healthy boy here with us, what kind of life would that be for him? For us? Marriage is already tough enough but to possibly have two boys who would never walk, eat or breathe on their own – What kind of life is that for them?!
Finally the morning came and we headed to the place. I was sick. I was sick physically, mentally and emotionally. When we finally found it we knew that we were in this together. We walked in, registered and waited. The nurse took us to talk with the doctor. It was just horrible. She wanted to make sure were fully educated on our babies at this point in the pregnancy. She walked us through what was to happen. Then we moved forward. Honestly when one goes through this you remember it and want to share it but it’s just a horrible thing you can’t really put it into words. Just know it was horrible and something I’d never wish on my worst enemy.
When I got back to the recovery room, Cameron was there. I was so hurt but knew it was right for our family. This was only our decision. The hardest thing we had ever faced.
We flew back to San Francisco the same day the procedure was done, February 12th. We went right to the hospital and forgot that we no longer had our hotel, they had taken all our stuff and put it in storage. After all, we were supposed to be out of California on the 12th. How quickly life changes. So Cameron got me straight to the hospital at UCSF and sorted me out. I even felt the babies move. Then there was another u/s. Nurses and doctors were everywhere but only a few in all of the hospital knew what really was going on. It wasn’t just the fetal demise that I was told to say when I came back. They gave me some medication to help me sleep while Cameron went on to figure out the hotel situation.
The 13th was a day of rest and talking to a lot of nurses and doctors. All the care, support and love around made it “easier.” I decided to shower. I looked at my pregnant belly knowing they were dead. No longer in pain, but yet I was in so much pain. Hearing the water hit me made me think of rain and how this “rain” might erase my pain. It didn’t.
When Cameron came back after he sorted out all the hotel issues. Who would have thought downtown San Francisco would be selling out of hotel rooms for Valentine’s Day?! They do and did! Our hotel felt so horrible about it after finding out what happened they sent Cameron back with the most amazing deep red roses. I stared at those roses forever that day.
The next morning at 5:00 and 5:01am, on the 14th of February, our boys were born at 27 weeks; so beautiful to me and so heart breaking. At one point the doctors said they wouldn’t do an autopsy because they knew the truth and we were devastated knowing that it was TTTS but it seemed like there was no use for our boys at that point. It killed us all over again. After talking with the doctors more, we got our full autopsy done on our boys to help others in the TTTS world. Thank goodness!
To this day it is a report I share with all doctors, MDs or OB/GYNS. It’s the least we can do in memory of our boys. We never named them. It was just too hard to think about anything. Just getting going after the delivery was tough but I knew I was not going to stay in that hospital. By 4pm we were out, dealing with Valentine’s Day traffic. It took 45 minutes just to get into the valet parking area. Everywhere we went, everyone was in love, happy as can be. And here was our broken family walking in with our son and two memory boxes. It was the first time I ever fell apart. The poor bellman didn’t have a chance with us but when my husband finally told him what had just happened he teared up, said sorry, got out of the elevator and got us into our room ASAP. He knew we needed the isolation. When my hubby tried to give him the tip, a hefty $20, he said, “No, you guys just take care.” It was our first outside connection with the world. The world we knew didn’t know what we had just been through; nor what we would be going through the rest of our lives.
The next hours were in isolation with Cameron & Braden. I couldn’t bear to get up. I hurt in so many ways. The journey home was horrible. The grief was/is horrible. The whole story is horrible. I’ve told it openly now; at least to my TTTS families and close friends.
Stage I: A small amount of amniotic fluid (oligohydramnios) is found around the donor twin and a large amount of amniotic fluid (polyhydramnios) is found around the recipient twin.
Stage II: In addition to the description above, the ultrasound is not able to identify the bladder in the donor twin.
Stage III: In addition to the characteristics of Stages I and II, there is abnormal blood flow in the umbilical cords of the twins.
Stage IV: In addition to all of the above findings, the recipient twin has swelling under the skin and appears to be experiencing heart failure (fetal hydrops).
Stage V: In addition to all of the above findings, one of the twins has died. Usually the donor twin is the twin to die first, but it can happen to either.