TTTS, what to do?

As many of you may know, in my 4th month of pregnancy I have been diagnosed with TTTS (Twin to Twin Transfusion Syndrome) following the loss of one of our twins. I have not publicly spoken much about it as it still breaks my heart but looking today at my daughters face, I am one hell of a lucky mama.

Many have shared their own heartbreaking stories of loss and pain during pregnancy which truly touched me. No loss or story is the same. It has surprised me though how many have lost both twins.

We lost our daughter to Twin to Twin Transfusion Syndrome (TTTS) which is a rare and serious condition that can occur only in identical twin pregnancies.

Once we found out that our two little girls were suffering from TTTS, our doctor in Jakarta advised us to seek treatment overseas immediately. To his knowledge there was no specialist nor medical team experienced enough to treat TTTS in Jakarta. I have to admit that I was surprised to hear that we had to seek treatment overseas and at the same time it filled me with so much sadness as I imagined other parents being confronted with the same diagnosis. We considered ourselves lucky to have the possibility to fly to Singapore, have a place to stay there and be able to see a specialist in Singapore but we understand that not every couple has the means to do so.

For all the mamas out there who are blessed with an identical twin pregnancy, please insist to get an ultrasound every one/two weeks to be sure that your babies are on the right track. If you do have a feeling that something is not right, listen to your gut feeling and see a doctor immediately.

This website has helped us a lot understanding TTTS. (www.tttsfoundation.org) 

We can only highly recommend the KK Hospital in Singapore. (www.kkh.com.sg) They are one of the only hospitals in Singapore with a TTTS team who can give your babies the best chance.

There are several different approaches in treating TTTS. Every twin pregnancy is unique and so many different factors play a role.

In our case we chose to undergo the laser ablation surgery as it was the best chance for survival of one baby, best case scenario both babies.

Dear Mamas, if anyone of you needs more insight or has been diagnosed with TTTS and needs more information or wants to share their own journey, please feel free to comment, send us an email, share your experiences with us. I'll be more than happy to help out in any way that I can with what I have learned.

I hope that in sharing information with each other we can try and prevent another parent to go through the loss of a child.