Updated: The statistical calculation is 1 in 6. The amnio is scheduled for 7th May. I'm seeing a psychiatrist on Friday.
I am updating regularly mostly for myself. It helps to get the hard facts written down.
I saw my OB again this morning. These are the facts:
1. Even if the nuchal fold resolves itself, it in now way changes the statistical risks. I don't have the statistical results yet, but they will be positive. I asked her how a statistic could be positive. She said because the threshold is considered to be 1 in 260. OBs consider the statistic positive if you get something more than that threshold and they recommend amniocentesis. So 1 in 3 is going to be one of the worst statistics possible.
2. The gold standard (her words) in Europe is to propose the nuchal fold test between 11 and 13 weeks. Here they have been doing that for 15 years. In the US, being such a large country, it is very expensive to roll out new standards nationwide. The US is more advanced than Europe in some parts of obstetrical care and for others needs to wait to get a full number of years of statistics from other countries due to the prohibitive costs. This was her explanation.
3. The fact that the nuchal fold measurement was large means that there was a problem. The problem is most likely due to trisomy 21. However, it could be that the amnio shows no trisomy 21. The next most likely reason is a heart defect, ranging from light to severe. All they can see now is that the heart seems to have the four requisite chambers. But it's to early to see whether the blood vessels are correctly placed. Doppler circulation tracing (which I would have had anyway) can see this, usually at 18 weeks but maybe at 16 weeks it will be possible. The next reasons can be due to other organ defects (we didn't go into this but I am guessing a problem with kidneys). Finally it can also be caused by infection (Parvovirus or other). As far as I understand the very last last reason is that the measurement was a fluke. So I have to be realistic and understand that the outcome is not going to be good. I think the best outcome I could hope for is a mild heart defect.
4. Having CVS now or amnio in two weeks (7th May to be precise, although the appointment is to be confirmed) doesn't change the fact that termination would be by delivery.
5. No-one can say for sure but it is unlikely that the foetus will suffer what we would call pain during a termination by delivery at 17 weeks.
So if you are able, please come up to the line with me. There is no realistic hope of there not being a problem. I am preparing myself for a termination - the same week that we should be on a family trip to celebrate my parents' 40th wedding anniversary, one week after our own wedding anniversary and that of my in-laws.
I have not at all taken your hopes in the wrong way, I take them as they are meant to be, supportive. All your comments have meant a great deal to me. But to continue hoping for a fluke measurement would leave me standing way out in front whilst you're shouting encouragement from a safe position several metres back.
lots of love
Rosepetal
6 years ago
19 comments:
oh rosepetal, I am just getting caught up with your news because we have been away on holiday and to say I am devastated for you is an understatement. I will be here to support you no matter what, I just wish I could do more. I am angry and saddened beyond belief that this has happened to you.
I can't say that I am not going to keep hoping for the best. But I am certainly right there with you no matter what happens. Good news, bad news, whatever it turns out to be, you are never alone here.
Trying to hold out hope is a natural reaction and I think every parent wants to believe that things are going to be okay. Preparing for the worst is a defense mechanism, and I have been there. When we lost Adrien, I *knew* deep down despite all of the encouragement that she had a chromosome defect. I knew she was going to die. But on the other side of the coin, I was convinced that Aaron had Trisomy 18 and he ended up being just fine. You just never know until you get those amino results on paper.
Please know that I am thinking about you and whatever you need, we here in bloglandia will do what we can to ease your pain.
(((hugs)))
God Rosepetal, I am just so sad for you right now. Why has lightening struck twice? I have never believed things happen for a reason, I actually think life is quite random. and I am aghast that you will have to suffer all over again. This truelly is so unfair.
Here in Melbour.ne Australi.a, the nucha.l fold is measured between 11 weeks and 13 weeks and 5 days. and here 4 mm would be considered a very thick NF measurement (at any age). I still have hope that the NF is a fluke and will resolve itself soon but honestly I am more inclined to think 4mm is very bad news.
I am so, so sorry to have just written that. I guess I am trying to be very honest with you about my opinion. Whatever happens and whatever you decide to do, you have my full support and heart felt sympathy. I am just, so, so sorry.
I'm so sorry for you having to go through this, Rosepetal. As I mentioned in my repsonse to yesterday's post, I think I can empathize pretty well having gone through something similar myself. If you want, you can email me long35acre@gmail.com if you wish. No problem if you don't - just wanted to let you know that I understand, as much as someone can. I was just telling my SIL that no matter if someone goes through the same experience as you, you still can't TOTALLY understand. Everyone has their own personal experience and is different in their own way and will be affected differently. Just know that I'm thinking about you.
I'm here. I have no idea what to say, but I'm here. {{{hugs}}}
I'm just so sorry that things are looking so bad at this moment. I am attempting to prepare myself for the worst of news as I check back here often. It is hard for me to accept that you would face such travesty again - and I am not even the one who is facing it. Because you have asked, I will not write of hope. I will, however, write of support. I am absolutely with you; you don't have to stand out in front all alone.
I am so sorry that your are going through this. It is incredibly cruel and I feel enraged at the unfairness. I'll be right here hoping like hell that I can make some tiny shred of difference to you. I'm just so sorry for you and your DH (((hugs)))
jesus what a complete fucking nightmare. and you cant wake up because its your life. i'll stand with you and say this sucks beyond comprehension.
how could this happen? i know disasters dont make you immune to future disasters but c'mon. i would be so angry.
my 2nd disaster was met with what i call tragedyfatigue and it left me feeling isolated, unsupported, bitter, angry, and shell-shocked. good for you for asking for what you need from us. that directness will come in handy irl.
what will you do? when can a heart defect be detected?
i just wimped out there and jumped into details to avoid sticking with the sheer awfulness of the situation.
when will your happy ending come? seems like a(nother) lifetime away; what i mean is that i imagine losing v seems like a lifetime of heartbreak. and now so, so much more heartbreak.
as i write that i wonder if i should put a maybe. maybe more heartbreak? is it false to hope for a mild heart defect?
back to the safety of details. i'm sorry that i'm not a real life friend that can come to your side, make you a cup of tea and shake my head in disbelief with you. hopefully somebody is doing that with you.
I'm so terribly sorry that this is happening to you. It must feel like a nightmare being replayed. Will they at least be able to get you a quick preliminary read on the amnio -- I think it's called FISH, so that you won't be left wondering?
Rosepetal, I'm sorry. I wish I knew something better to say.
Thinking of you. Hugs.
Dearest Rosepeal,
My heart is saddened tonight as I have read your recent entries.
It is the chance we decide to take when ttc again, isn't it? The chance that we could be brought through another horrible nightmare..we take that chance almost on the premise that we have carried our cross once, surely life (God) would smile upon us this time. What a heavy burden to bare. For what reason? For what purpose does so much pain serve?
So many times when thinking of "trying again" fear grips me and my thoughts go "Sam, you are okay as far as ok can be today, you have been through the shittest of situation and managed to come out the other side fairly sane. Why then, would you want to put yourself in a position again to possibly endure another such heartache?"
I am not at all sure I know my own answer to this question...but, it is a "chance" we will all take over and over again to be able to have the ultimate final result.
I will pray for your continued strength throughout the following weeks. Know that we all are here for you whenever you need us.And even when you don't need us :)
I wish I had the right words...
I do want you to know that I continue to hold you in my thoughts and that I will be here no matter what happens.
Life can be so cruel. It makes me so angry and sad.
I'm so very sorry that you are going through all this worry. Worry is not even sufficent enough of a word.
Thinking of you.
I'm still here, still praying and thinking of you!
XXXXXXXXXXXXX
Oh no. I am very sorry to see that you're going through this. I really really really hope that things turn out for the better rather than the worse. :(
I just don't know what to say.
I can not imagine being where you are now. I'm sure you both just want to run screaming at the world.
Know that I am thinking of you though.
Hugs
xxx
I am sorry I just wrote about having hope on another one of your entries! For some reason that is the natural human reaction. Thinking of you, and will check back often. You have MANY people standing with you!
Oh Rosepetal...
I've been a terrible blog follower lately and missed this news entirely. I'm so sorry. I'm beyond sorry. That you have to worry about this - even think about it for second - is incomprehensible after what you've been through.
This isn't fair. This is so far beyond fair I can't even see fair.
I'm sorry. Please know I'm here and I'm thinking of you.
(((((HUGS))))
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