A Mommy Blog About Raising Men, Not Boys.

Thursday, November 19, 2009

Hi This is Dr Jones, I've Got Some Really Bad News

This, in my opinion is not the way to start any conversation with a pregnant woman that doesn't end with "And your baby is dead."

I went last Friday for my next round of sequential screening - and they RAVED about the baby on ultrasound. She looks great, everything looks great, and I quote "WE HAVE NO CONCERNS".

Then I get the call from Mr. Bedside Manner. Oh excuse me, DOCTOR Bedside Manner.

I hold my breathe while he talks. "Well all of your risk factors have shot way up, we're especially concerned about your trisomy 18 risk factor which has shot to 1:85. We are going to need you to come in next week for more ultrasound and additional screening tests."

And I sob.

Trisomy 18, if you don't want to click on the link, means death for your baby. It's an extra chromosome on pair #18 and it includes horrendous birth defects and odds so bad - I'm amazed everyone doesn't terminate on the spot. It is a cruelty that I didn't even know existed and now they're telling me Julia could have it.

Oh and don't forget DOWNS. Like, Downs figures aren't as good as they were either - but hell, I'm barely even PHASED by that in the face of the other.

So I got off the phone and I sobbed and sobbed and I called my husband hysterical and I sobbed some more and I just sat there.....I felt adrift. Like I'd been cast out of the lifeboat and no one else was in sight.

And then I got mad.

If this was so fucking dangerous WHY didn't Dr Bedside Manner suggest amniocentesis immediately? I called their office back, still hysterical, and DEMANDED an amnio. I wanted it YESTERDAY. They put me through to a genetic counselor who I was probably not that nice to but I was fairly busy sobbing and screeching and telling her I HAVE TO KNOW I WANT AN AMNIO RIGHT NOW.

So they made it happen, for Monday.

And I was still hysterical. I couldn't think all day yesterday, I was in a blind panic and felt like everything was just over. Done. I didn't sleep right, I had nightmares all night and I frankly faced today fairly numbly.

So today I called my regular OB and told them I was cancelling my appt for next week, and that I'd reschedule after I got the results of my amnio. I just couldn't take going to that office, seeing all those big bellies and smiling faces........and knowing that my baby might never breathe. Of course, in the course of that conversation I again began sobbing and hitching in what I can best describe as an undignified pregnant woman with raging hormones trying to sound rational and in control.

It SO did not work. They immediately put me through to my nurse, who told me my OB was in surgery but he'll call me tomorrow. And to calm down. Duh.

So then, I called my high risk OB (yeah I have TWO, don't be jealous.). I explained that I wanted answers, I wanted to understand my scores and if they were integrated scores or individual scores and also - I wanted to know WHY they changed so much.

Dr. Supersweet and Understanding called me back.

The firs thing he said was, "You do realize that your odds, despite having worsened, are still better than double those for your age group?" Which - I swear to you the other doctor told me the OPPOSITE. I began to calm down. Then he walked me through why he's not immediately concerned about Trisomy 18.......he said it's fairly pronounced, and while he can't PROMISE, he sees nothing on ANY of my ultrasounds that indicates she has any of those birth defects - which are physical and just tragic. He said, reiterating what I have already heard, that on ultrasound, she's looking very good.

He also said that he understood that I wanted an amnio, that not knowing is very taxing and hard when you have all these hormones raging - and an amnio can provide reassurance that nothing is wrong or define what IS wrong, if something is.

I got off the phone feeling better.....able to breathe. I made an appointment with a genetic counselor because he asked me to and said he felt it was important so FINE. Then after that we'll do amnio and results will come back within 2 weeks, I guess depends on how long it takes them to match up and count chromosomes. If I remember properly from high school it takes a while to figure out which are exact matches. :)

Yesterday, I thought the world had ended for Julia and that I was going to have to decide to carry her to term just to watch her die, or make the ultimate decision and grieve sooner rather than later.

Today I feel better. I'm still fairly emotionally raw. But I'm better. And my husband made me laugh hysterically several times this evening.....so I think that is a good sign.

I leave you with, something to make you smile.


Winter Jefferson said...

Everything I have is crossed for you. Including those, yes.

<3 to you and your family

Chestnut Rau said...

This comment has been removed by the author.

Chestnut Rau said...

I am very familiar with how horrible your situation feels having been through it myself.

My thoughts are with you and your family.

jude said...

i have a 12 year old daughter who has full trisomy 18. if you would like some real information feel free to email me at jfwolpert@gmail.com
i know how hard the 2 week waiting for the amino results is also. thinking of you.