TTTS Twin Pregnancy - Jennifer's Story

TTTS stands for Twin-to-Twin Transfusion Syndrome. It is a condition that affects some identical twins in the womb. When the twins share a placenta, sometimes they will do so unequally: one twin will receive too much of the blood/nourishment from the placenta, while the other receives too little. In fact, blood from one twin (the "donor twin") is actually diverted into the other twin (the "recipient twin").

This condition is very dangerous to both babies. Many do die and, those who do survive, sometimes have lasting medical conditions....

There is hope, though! Many do survive and go on to be perfectly happy and healthy babies. But awareness is key!

Why is a TTTS twin pregnancy so dangerous?

It must be noted that TTTS is a disease of the placenta, not the babies. Babies affected by TTTS are completely normal. It's simply a matter of making it through the pregnancy. However, due to the babies not receiving an appropriate amount of blood from the placenta, they are both in danger: the "donor twin" can suffer from anemia or simply fail to develop. And, the "recipient twin" can suffer from heart failure.

TTTS affects approximately 1 in every 1000 pregnancies. Despite that, though, it is not a widely known or understood condition.

Our Story with a TTTS twin pregnancy...

At 27 weeks, I went in for an ultrasound, and it was shown that Anna was a few ounces heavier than Josie. It was shrugged off at the time as just the normal differences in size that can occur in twins. Afterwards, I did start to notice that the right side of my belly (Anna's side) was getting bigger than the left. I figured it was just the way she was laying.

Then, a week after the ultrasound, I woke up in a puddle, went to the emergency room and was told that my water had not broken. However, I was dilated 1cm and put on light bed rest. The doctor on call said that the fluid I was leaking was probably just the babies pushing urine out of my bladder. They did like to kickbox it!

Over the next 10 days, I continued to leak fluid and get more and more uncomfortable. I had so much blood running through me that my cheeks and lips had a permanent red stain, I was getting nose bleeds at least once a day and I could actually hear the blood rushing in my ears. However, I just chalked it all up to the extra stress of carrying two babies at once.

Then, while eating dinner, 10 days after my visit to the hospital, my back started to hurt. Over the next hour or so, the pain and pressure started to get worse. I still didn't really think that I was in labor, but I finally told my husband that I wanted to go to the hospital, again.

By the time we arrived at the hospital, the pain/pressure had started to feel more cyclical in nature. And, while waiting to get checked in, I began to shake...

I figured at first that I was just nervous because now it really did seem like I was in labor. However, as it turned out, I had a 102 degree fever. Apparently, an infection had set into my uterus due to my water having been broken for several days. And, due to the infection, I had to have an emergency C-section, even though my girls were in the right position to be born vaginally.

I have to admit that I was so grateful after they numbed me... shaking uncontrollably from fever while having labor pains is probably the most unpleasant thing in the world. The babies were born in what seemed like no time and then whisked away while I was in a drug/fever-induced haze. Luckily, I didn't know everything that was going on at the time... I actually had this complete confidence that everything was going to be just fine.

However, while Josie was doing pretty good, even though she was just 2 lbs. 12 oz., poor Anna at 3 lbs. 15 oz. scored a 0 on her initial APGAR test and had to be put on a ventilator.

The girls have completely recovered from their bout with TTTS, though. Anna only needed a few days worth of help breathing and, while she was very red for a while due to all the extra blood she had received, that went away with time, as well. She did have to spend a few days under the black lights for jaundice, but she recovered quickly from that, as well.

As for Josie, she had to take some iron supplements for a little while and, had a slight heart murmur, but all of that cleared up on its own, too. They actually only had to spend a month in the hospital, even though they were born almost 10 weeks early!

We were extremely lucky... however, many are not so lucky. And, while sometimes there is nothing that can be done in cases of TTTS, many times there is. Unfortunately, though, it is such a little known condition, that many medical professionals don't even think to look for it.

The Importance of Awareness with TTTS twin pregnancy

It actually took me several months, and lots of research, to finally put all the pieces of the puzzle together and understand exactly everything that had happened and why.

I can't say for sure that, even if my doctors had caught the TTTS sooner, that the outcome would have been any different. I do think at the very least, it could have been less traumatic for both the girls and me. I also know that I shrugged off a lot of things, because I trusted my doctors, when they told me everything was just fine.

I do not in any way advocate frivolous lawsuits against doctors. While I do believe mistakes were made, in the end, we had no damages, so we simply count our blessings. Also, doctors are not miracle workers. Sometimes, it can seem that they are. I believe the people that saved Anna, after she was born, qualify. However, sometimes bad things just happen and it isn't anyone's fault.

However, I do advocate staying very aware of what is happening with your own body and trusting your own instincts. Also, I do believe there needs to be more awareness within the medical community of this disease and, I believe that the possibility of TTTS in twin pregnancies should be thoroughly investigated. The more you know and the earlier you know it, the better your chances for a happy ending.



Written by: Jennifer Miller

Find more info about twins at her website, Twin Happy

You can also read her free e-book "Two Snowflakes" (a story inspired by her twins) at Two Snowflakes