Friday, 20 April 2007

Bad news

This morning I had an appointment for my end of 1st trimester tests. My OB was getting one large measurement for the nuchal fold and one smaller one. I was sent to a specialist centre in town, which saw me immediately. Thankfully DH was with me.

The nuchal fold was confirmed as 4mm. It should be 2.5mm at this stage or at least less than 3mm. Large nuchal fold is a marker for Trisomy 21 (Down's Syndrome).

There is some other measurement which is an indicator of Trisomy 21 to do with the nasal bone, and that was normal. The form of the heart seemed okay as well, as far as they can tell at this stage (I am 12 weeks 5 days) although they can't guarantee it.

They will do the statistical calculation based on my blood test and my age and the u/s measurements, but already told me that it's going to come out indicating a need for an amniocentesis. The specialist estimated that I would come out with a 30% chance of the baby having Trisomy 21. An amniocentesis cannot be done until week 14 or 15. At that stage I won't be able to hide my pregnancy anymore. At week 15 the amniocentesis carries less than 1% chance of pregnancy loss. You get some preliminary results after 24 hours but it takes another 2 weeks to get the full karyotype (chromosomal map). If I decide for a termination it would be by delivery at about 17 weeks, too late for D&C.

I'm not sure I can do this anymore. I'm not sure if I have any feelings of love for this baby (now it seems I can type baby). Not because of this test but even before. I don't know why this is happening to us. How did my life get on this track? Less than a year ago everything was so different.

19 comments:

Jillian said...

Oh jesus Rosepetal. I am so sorry that you have this awful news to deal with as well as the thoughts of what might happen into the future. I will be hoping with all my being that your little one is ok and that time passes as quickly or slowly as you need it to. Oh hun, I just hope those other good measurements indicate a healthy baby (((hugs)))

Sara said...

I'm so sorry, Rosepetal. I can't imagine what you're going through. I'll be hoping hoping hoping for you in the next few weeks. I can relate to the what happened? Our lives were so different just a year ago. Whatever happens (and chances are still greater that it will work out well), whatever you decide, I'm thinking of you.

SWH said...

Rosepetal, I'm so sorry you didn't get news to make the next few weeks less stressful. I know there area bazillion things to think about now and decisions to make. I'm sure you must feel totally overwhelmed (I know I would). If it helps I hope you can still write about things, but if that is too hard we'll understand. We'll all be here to listen to whatever you need to say.

many hugs

Anonymous said...

I am sorry...what an awful thing to go through. I don't understand why this happens. I sure do hope that the measurement is just a fluke and that the baby is just fine. Big (((hugs))) and I wish there was something I could do to help. You've got a lot of support here, and we're always listening if you need to talk.

Anonymous said...

Another thought: Can you have a CVS (Chorionic Villus Sample) done? It can be done now, and you'd get the same answers as with an amnio, but a lot sooner.

Just a suggestion. Also, both of my sons had Trisomy markers when I was pregnant, and they are both fine. Just to try and reassure you that the 70% positive is a good chance.

Rosepetal said...

The CVS vs amnio question is something I have to decide on in the next few days. When the doctor said 30% chance, my initial reaction was 70% of not having it. And then when I got home, I thought 30% is 1 in 3 which is a fucking huge chance.

Anonymous said...

I really hate statistics. I hope I didn't upset you or sound preachy when I mentioned 70%. I just want to ease your stress and I am sure it's impossible at this point. I wish you could have answers now instead of having to wait so long. It just sucks.

Rosepetal said...

Kathy, you didn't upset me at all or sound preachy. 70% is what I said to the doctor as well. But now it just sounds really bad. And of course now I've done a lot of online reading and it sounds pretty bad too. I need to talk to my doctor but I think I probably will end up going the CVS route as it is faster.

kate said...

I am so very sorry...i don't have any magic words of advice...just know that i am thinking of you as you face this hurdle...

Good news about the heart and the other measurement, though...so maybe it really is a fluke.

I was also going to mention CVS but i see that kathy has already done so, so i will desist. I think the loss rate with CVS is higher than 1%, though i am not sure.

In any case (((((((hugs)))))))

AJW5403 said...

I am so sorry for this news you have received. Reading you post has brought me to my knees. You have read my blog and know my story this hits so close to home with me. I know you don't know me other then my blog but I would be willing to give you a call if you would like if you need somebody to talk to who has been in your shoes.

This is such a scary time when you don't really know if there is a problem or not. I would suggest that no matter what the other test say to get the Amnio. With me I had to know for sure if my baby was healthy or not.

You and your family are in my thought durring this hard time. Just let me kmow if you would ever like to speak. You can e-mail me at anissa64@hotmail.com

AJW5403 said...

I just read your comments and I would to stress to you to do lots of research abut the CVS. I chose to do an Amnio with Gavin because they were not able to get a sample throuh my belly since my placenta was posterior (sp). If they have to go though you cervix to get the sample it increases he chance for a miscarriage. Not trying to scare you here just giving you some of the info I know.

Emma's Mum said...

I check in on you every day Rosepetal, and am so sad to read that you are having to hear anything but positive news. I know it is so hard for you to stay in a positive mind frame right now, but if it is ok with you, I will stay there for you.....we all need each other every step of the way. I will be thinking about you and praying for good news with the upcoming tests. Many many hugs to you.....

delphi said...

God, Rosepetal, I am so sorry that you are facing this hurdle. I also don't have anything helpful to suggest, but know that I will be thinking of you and checking in on you a lot. I am hoping and praying that the nuchal fold measurement is a fluke and that amnio/CVS reveals a healthy baby.

Laura said...

Oh Rosepetal, I know that you must be so scared right now. I'm so sorry. I talked to my doctor this morning at my appointment and asked him about the nuchal fold test. He said that the ultrasound at 18 weeks is much more reliable and that a slightly larger nuchal fold at this stage could be caused by a whole host of reasons that will straighten out by that 18 week ultrasound and reveal a healthy baby. Your other measurements are so good--I'm hoping along with everyone here that the nuchal fold measurement is just a fluke. I'm thinking of you constantly (((big hugs)))

whatthef*ck said...

uh uh. no way. can't be. jesus christ i am always waiting for the other shoe to drop, i imagine you were too. hopefully this will turn out to be a big fat horrible scare and nothin else. i'd be getting a cvs so fast it would make my head spin. 30% is huge, much bigger than the chance of a miscarriage from cvs. my doc told me cvs stats are tricky because so many 1st trimester losses occur naturally at that time and its hard to know what the cause was. if you have a doctor you trust, then hopefully you can put this behind you asap. good lord. cant imagine waiting and worrying for so long esp as you start to show.

this is going to be a scare.
this is going to be a scare.
this is going to be a scare.
say it with me now.

okay how 'bout, THIS HAD BETTER BE A FUCKING SCARE BECAUSE YOU'VE BEEN THRU ENOUGH HEARTBREAK FOR 10 LIFETIMES AND A MAJOR PROBLEM WOULD BE COMPLETE FUCKING BULLSSHIT AND HAD BETTER NOT HAPPEN.

so glad that the other markers looked good and that the 4mm could be explained by something else. i'm going to hold some major hope for you based on those things.

Clare said...

Oh G0d Rosepetal, I am so sad that the U/S revealed bad news. It made me tear up reading it. I really wish this 4mm is just nothing and your baby doesn't have trisomy. I hate that this is happening to you. I'm clinging to the 70% and hope the odds are in your favour. I really want you to get a lucky break sometime soon.

BasilBean said...

Rosepetal, I just want to let you know that I am thinking about you. I'm so sorry that you are having to go through this. I will continue to keep you in my thoughts and will do my best to send you positive energy from where I am.
(((((hugs)))))

Brenda said...

I can not believe this is happening!
I have read so many blogs lately that have been full of good news only to have problems lately. I just don't know what to say.

I really hope things turn out ok and this is just a little hurdle.

Hugs
xxx

niobe said...

I don't know how I missed this. How awful that you have to deal with additional stress -- where everything might be fine (and chances are that it will be fine), but it might not.

I know you've said over and over again that suffering doesn't confer some special immunity against further suffering. But it should. It really should.