TTTS-Twin to Twin Transfusion Syndrome

I received our annual donation request letter from the TTTS Foundation. It made me cry. She included a story shared on the TTTS facebook page. Amber, was diagnosed at 19 weeks with TTTS. She had laser surgery at 22 weeks and delivered her boys at 25 weeks. Dayton passed away 25 hours after he was born due to heart failure. Alex lived for 10 days and passed away from lung complications. What made me cry was this, "We spent every penny we had trying to save them. After 2 trips out of state and 10 days in the NICU, I now spend my maternity leave at home alone. I hope no one else has to go through this.". Unfortunately, I know how it is to spend your maternity leave at home, alone. I went back to work within a couple of weeks. After a week or so (time is a bit blurry), my family had gone home, friends had gone back to their normal lives, husband was back to work and I was at home alone...thinking...crying...wishing. I went back to work because I felt if I was doing something that I would be better off. In a way, I was.

Why am I writing about this? I want to spread the word of this horrible syndrome. It occurs more often than SIDS and everyone has heard of SIDS...have you heard of TTTS unless someone you know was affected by it?? My doctor never mentioned anything about it. I briefly read one paragraph about it in my twin book but it said it was rare so I didn't think much about it. Anyone that is pregnant with twins needs to be notified of this. Even if they say they are not identical. I know of moms who lost their twins to TTTS even when the doctors said they were not identical. They (dr's) can be wrong.

Mary, the founder of the TTTS foundation (www.tttsfoundation.org) had twin boys who were born premature due to ttts. One survived and one passed away. The survivor, Matthew, is now a healthy 21 year old. She founded the TTTS Foundation in honor of her sons. Mary provides information about ttts, treatment, access to medical specialists, plans of action, emotional support and a circle of care program. This program provides free airline tickets and hotel stays to get to treatment centers and pays for family expenses and bereavement costs. Bereavement costs is not something you think of when you deliver your babies...we were fortunate that a local funeral home donated their time and facility to cremate the boys and provide us with urns. Mary has a forum on her website and that is what saved me. I met other mothers who were going through the same exact thing as me at the same time. They have been wonderful friends and they honestly saved my life. Mary provided us with a packet of information specifically for dealing with the loss of your babies. It is a wonderful organization...please check it out and pass this on to help spread the awareness of TTTS, www.tttsfoundation.org.

December is Twin to Twin Transfusion Syndrome month in honor of Mary's sons who were born December 7th.