Dennel’s TTTS Story

In May of 2006, we decided it was time to try to get pregnant. 3 weeks later, I found out I was pregnant. I was sick. So sick. But I always believed that whatever pain, bring it on, it’s worth it to have a baby. Around 3 months I felt a little bigger than normal. I suspected twins, but I though the uterus grows faster second time around. I already had a 2 year old girl. But because it’s fun, after my checkup, I got a real estate flyer and waited for my husband to get home. I told him we needed a bigger house because we were having twins. He didn’t believe me. Later that night I admitted my bluff.

As weeks passed, I was getting bigger and bigger, but I didn’t worry as my ultrasound was coming up. I thought I had a 30% chance it was twins. When the ultrasound technician looked at the screen she said, so you know there’s two babies in here, right? All my TTTS mommies know that wobbly feeling and that big goofy grin. I was excited. Terrified. I wanted to know what they were. I watched them on the screen and I saw a penis and said, oh, it’s a boy. And by that time, she had already told us they were identical. I never thought that that would be the last time I saw my babies move. She worked on my belly a long time, and told us she wasn’t sure if one amniotic sac was big and one was little or if they were sharing one. I was a bit in shock. Shaking.

Twins are such special people. I’ve always been amazed by twins. The radiologist came in, after looking at pics, and said everything was fine. He said that I would have to go to my doctor to be referred to a specialist. I asked, “right now?” He said no, just at your next check up. But smart me, I booked the check up for a few days later. I called everyone I knew to tell them we were having identical twin boys. My husband always wanted a boy and he had such a permanent smile on his face. If he was scared at all, he didn’t let on.

I was on diclectin to help with nausea, but if I ate breakfast, I guarantee you I puked my guts out. I slept with water bottles around me because I was in such pain. I told my doctor and she said, that’s just because you have two big healthy babies in there. So I sucked it up. I couldn’t walk from one side of the store to the other without a rest. I wondered how I’d make it through the other half of pregnancy.

I went to work one week after my ultrasound. ( I work part time) I couldn’t do it. My belly just hurt so much. Constantly. So I called my boss in tears from a clients home and she said, “Go, take care of yourself. Don’t worry about work.” So I called the doctors office. They said if I was in that much pain, go to the hospital. Reluctantly, I did. They did the blood work and urine work and did the heartbeats. Everything was fine. They asked what my pain tolerance was like. They made me feel like I was just a hypochondriac. But I didn’t feel OK. I didn’t. So, I took the weekend off and went to the doctor on Monday for a magic note to get out of working. Just touching my belly had me in sobs. She said I shouldn’t be in that much pain and that I needed to go back to the hospital. She was going to order an ultrasound this time. She said she’d call the hosp and tell them I was on my way.

I went. My mom and daughter were there with me. The doctor I talked to was a twin, so I felt more at ease with him. I picked his brain about what life with twins was going to be like. Believe it or not, the biggest worry I had on my mind was switching the babies. Should I circumsize one and not the other or get a tattoo on one? How would I tell the difference?

Stupid thing was as soon as I found out I was having twins, I went to the library and got every book I could find. There were a couple paragraphs (more like sentences) about TTTS. They said there are no symptoms, and that prevention is regular checkups. So thank you to those who are writing books and getting the word out. I didn’t have the internet then, or I might have been able to find out more. But I probably would have been passive about it anyway. Everyone shares their success stories, and one main site I found after my loss made it seem like diet, prayer and surgery is a guarantee fix. I found out that my kind wasn’t exactly welcome. It scares those still pregnant.

At the hospital, they measured my belly and I grew eight weeks worth in one week. I was now measuring 42 weeks and I was 20w3d. So I was pretty sure I would bust before they came out. They came back with some serious faces. We think we know what’s wrong with you. You have TTTS. Twin doctor explained it. He explained the outcomes and the laser surgery. He said, the bad thing is only a few places in the world offer this surgery. Good news is Toronto is one of them and we have a chopper waiting to take you right now. We just need to do an ultrasound to confirm it. Just before the ultrasound, my husband got there. They let him stay, but after a minute looking at the screen, they kicked out my mom and little girl.

Her face was serious and she was quiet. I was pretty sure this meant that a baby died. She told me to brace myself. I told her one died, didn’t he? She said, no, they both did.

Either you know how I felt at that moment or you can imagine how that felt. So the next day, I delivered two amazing little babies. They had little fingernails, little toes, little penises, little eye lids. They were perfect. Except that they were dead. I didn’t hold them. I laid beside them. I touched them. I didn’t talk to them, I talked about them. But we can’t control how we react when such horrible things happen to us. I wish I would have kissed them and held them. I purposely didn’t take a camera with me because this isn’t a joyous occasion. This is the worst moment of my life. I didn’t feel the need to have a permanent reminder. But the hospital took pictures anyway and I’m so so glad they did. I look at them often.

Tyler was 10 1/2 inches long and 420 grams. Jayden was 10 inches and 220 grams. I was 20w4d.

Since then, my OBGYN that I didn’t get to meet until the day she told me they were dead, wrote up the radiologist. She said he should have seen a problem with the results and gotten me immediate attention.

Since then, I got a copy of my chart from the hospital.

Since then, I’ve fallen in love with 2 more babies. Beautiful, healthy, alive.

Since then, I had a surrogate baby for a friend struggling through fertility problems and miscarriages and knew in my heart, I did something good for someone else.

I will never have a son. I will never see what a little version of my husband would be like. I won’t get to see what having twins would have been like. I don’t get to try to breastfeeding them both at the same time. I don’t get to watch them be the best of friends and I don’t get to worry about mixing them up.

And I will never be the same.

But I firmly believe that we all have shit in our lives to deal with. We all have a cross to bear. My life rocks. I have a great family and friends. Had my twins survived, I wouldn’t have had my little girls. I don’t believe that everything happens for a reason, but I believe we choose how to react to everything that happens in our life. I have chosen to love my girls a little bit more, take nothing for granted, and do good things for others. I have chosen not to keep hate in my heart.

Dennel