TTTS:
Do you know about it?
Editor's Note: The information here came to me via email from Trudi. I had never heard of TTTS and felt it would be important to share Trudi's story and TTTS info with our readers. Last year we ran a series of articles about loss during multiple birth, and we continue to hear from families responding to those pieces. I hope this is another bit of information that might help raise awareness about possible complications like TTTS, but also about other support outreach options available to bereaved families.
From Trudi:
In 2002, I was carrying twins who were diagnosed with a disease called twin to twin transfusion syndrome. We battled the disease for 9wks and then suddenly and unexpectedly, both of my daughters lost their fight for life and were stillborn on February 25th 2002.
I have kept a complete journal and have found much comfort from writing, originally writing for myself and for my older children. I have since gone on to run a support website and know that many parents (women especially) will benefit if I share my story. When I was diagnosed there was no information available, there is not much information at all even in all the twin pregnancy books that I read. The best place for TTTS information is on the Internet.
To have to survive and go on with your life without your babies is a part of life that so many just don't understand. Hopefully if I get my story out there it will also help others who have not suffered a loss an insight to understanding this pain! I have written about my entire pregnancy; the diagnosis of a so called rare disease that the doctors don't know quite how to treat; the battle of fighting for your babies' survival; the heartache and pain of giving birth to stillborn babies; the battle to face each day ahead and find a way to travel this road of grief; the struggle of how family and friends just expect you to "move on and get over it"; and of how my own life has changed so much and will never be the same again.
My story is not all a sad one. I have gone on to be blessed with another child, and my husband and I are much closer. I have come a long way, and through losing my babies, met a wonderful dear friend who also suffered a loss to TTTS at the same time I did. Together, we now run:
a TTTS Support Website: http://ttts.8k.com/aumain.htm
an online yahoo
support group
[Editor's note:
Trudi didn't say which
Yahoo Group they are moderating,
but in doing a quick search
in the groups, I
found 9 of them there]
and produce a TTTS newsletter: http://tttsnews.tripod.com/index
We have also started a program in the hospitals here, where we donate teddies to bereaved parents in the hope of easing their pain of leaving the hospital with empty arms.
I do all that I do because of my girls. To honour their little lost lives...
Author Information
Trudi Penrose-Starr lives
in Australia.
http://www.babiesonline.com/babies/e/emilyamielee
