To Honor Fiona and Brigid

Our local newspaper published an article yesterday about TTTS and an event that we have coming up to raise funds for the TTTS Foundation.  It was online and also had a huge section devoted to it in the paper copy with a large photo of the family, and the headline...  Oh, the headline: 

"To Honor Fiona and Brigid"

It was bittersweet.  The editor emailed me to ask if it was okay with me to use their names like that.

I started sobbing.

Um...yes.  That, for me, is the point, really.  Thank you so very much for getting it.

Their names don't feel real to me.  They're sort of abstract, like they're not my children.  But to see them in print like that was so amazing.

I love the photo of our family because it shows that we're all still having fun together.

You can read the article here.  Please feel free to share it with others.  The goal is to make as many people aware of the cause and treatment of  TTTS as possible.  Sometimes, they might have to make their doctors aware.  I know when I asked my OBs specifically about TTTS - because I'd read about it online as soon as I learned we were having monochorionic twins (twins who shared a placenta) - and if I might be able to be seen by a perinatologist earlier for monitoring, they pooh-poohed my concerns.  Both of them (I switched after the first one dismissed my request) felt it was too rare to warrant "extraneous" ultrasounds.  I wouldn't need one before the usual 20 weeks, they said.  I even called the perinatologist to ask if I might be able to come in on my own, without an OB's referral.  They said no.

And yet, when we finally did get that ultrasound, at 19 weeks and 5 days, it was much too late.  The disease had progressed significantly and was in the late stages.

In hindsight, I wish I'd demanded it.  What would it have cost them to have me checked out early?  A form?  Probably not even that.  A computer click or two?  Women who are having multiples who share a placenta need not to feel like they are being pushy or silly for being concerned about this very real threat to their babies.  The doctors and midwives at my OBs' offices are not losing any sleep over dismissing my concerns right now.  They remain completely unfazed by it.

Yet here we are with two dead babies.

I guess this is the anger stage of my grief.  I'm not angry at God.  I'm not wondering why he did this to me or why did this have to happen to me.  I'm angry, though, that my physicians were ignorant, and that, even when I was the one who did the research and brought this disease to their attention at appointments asking to be monitored for it, they did not think it was important.  That is terribly frustrating.  And while I don't know that it would have made a difference in our outcome, it would at least have meant that everything that could have been done to stop it was done.

So now all I can do is warn others.  Be concerned.  Be pushy.  Demand.  No one loves your unborn babies like you do, and you are the only advocate they have.