Tuesday, July 06, 2010

...but you can call me Cerberus

I moderate a message forum for people who've experienced loss in a mono.chorionic mono.amniotic pregnancy. But we also get people on our site who were misdiagnosed and later found to be carrying mono.chorionic di.amniotic twins.  The biggest risk in a Mo.Mo pregnancy is cord accident. The biggest risk in a Di.Mo  (or Mo.Di) pregnancy is TT.TS -- twin-to-twin trans.fusion syndrome. It is a disease of the placenta wherein blood and nutrients are unevenly distributed between the twins. It can come on suddenly and severely and it can kill one or both twins. 

TT.TS can be caught with vigilant monitoring. Laser surgery can slow its effects, enabling the pregnancy to go to full term or very near. One of the leading experts on TT.TS, Dr. Julian DeLia, advocates drinking 3 cans of a protein drink like Ensure per day and his research suggests that TT.TS may be linked to hypoproteinemia and anemia, particularly in mid-pregnancy. And there are outward signs that the mother can be attuned to, if she knows what to look for.

Recently, I did my daily Loss Forum check in on the Mo.Mo site and found a post by a woman who lost a twin to TT.TS. Her other twin is in the NICU with suspected significant brain damage. In her post she indicated that she had not been to the site much because she didn't want to be scared by sad stories. I understand the need to shut out negative possibilities and just survive. I didn't want to think about the scary stuff when I was pregnant either. I knew I was carrying a ticking time bomb of a pregnancy. The closer I got to the time of delivery the more I felt my grip on the cliff side of sanity loosening. Between that abject fear and the religious tone of the boards, I didn't feel as though I had a place there.  But there's something doubly tragic in the idea that maybe had she stuck around and known what to look for, she might have recognized the signs. She might have taken the advice to consume more protein. It wasn't hard to find. It might have helped.

And too, I realize that I am one of those scary stories and it's odd to think of oneself that way.

Really? Me? My life is the tragedy you're trying to avoid? 
Well, maybe not your whole life, just this one particularly unenviable situation. 

I just found it unnerving to have someone spell it out like that, in the Loss Forum (MY TURF!!). With no hint of irony! Can you believe that?

In our corner of the site, down toward the bottom of the list, there is a family of us. I got all my sisters and me. A sad, sad welcome to you, newcomer.

It seems that despite avoiding the site until well after Eva was gone, I now have a place there. I guard the gates of hell. I welcome each new entrant with a deflated, toothless smile. There's a look of pity in my eyes that I can't help. Because I know.
     I know she didn't really believe it would happen to her.
     I know what she's in for -- at least its general outline.
     I know it is agony.

And she
is about
to find out.


  1. This is a story that began long ago and will continue.... and it is exactly this that I cannot accept.

  2. I am uneasy with my (possible) status as a cautionary tale or a scary story. You are right, it is odd to think of oneself that way, as someone surrounded with an aura of misfortune.