Thinking (aka Working Without Tools Again)

OK, so a lot of info has been coming our way.  We're waiting to find out more info from the hospital where we would be having the amnio done-our local hospital doesn't do twin amnios as they are considered a specialist practice, it's a hospital in London (not the same one as you mentioned, Thalia, although I'll be giving them a call, too) and the two consultants who do twin amnios there are considered field experts and have many thousands of frequent twin amnio air miles on them. 

This gives me some relief.

The nuchal showed a risk based on the neck measurements alone.  The rest of Twin 2 looked just fine, it was just the gap in the neck flap that put it over measurement.  I'm tempted to have a second opinion, but at the end of the day I don't know how helpful that would really be. We cannot have the blood test, which I think is called the P-APP, because twins knock the results out of the ballpark anyway.  We get this ultrasound alone as our screening test.  CVS wasn't offered, but the miscarriage rates for CVS are higher anyway, so I think maybe it's better if we don't do that one.

As to why we want to know more, well I'm going to be honest here and I'd really appreciate if I'm not attacked for it, your reaction may be to judge and I understand that, but we're all in differnet places in our lives.  Honestly, Aidan and I don't think we have what is needed to be parents to a Down's child.  We both have friends with Down's babies, and while I have no doubt (and have seen myself) how sweet and loving their children are, we have also seen (and been told by the parents) the extreme toll that a Down's child has on the marriage, the finances, and the family.  We're asking ourselves a lot of questions right now-if we have a Down's baby, how will that impact Aidan's two kids?  How will the healthy twin be impacted?  What will happen with our finances and jobs, as Down's babies are an incredible about of work in terms of time, attention, and special care?  If we don't test, will we spend the next 5 months in complete fear?  These are questions we feel we need to ask ourselves.

As for the test, the question of what happens if it is a Down's baby remains unanswered here.  We just don't know what we'll do then.  Do we reduce?  Do we keep it?  Is it even possible to reduce by one at that late stage here?  Can I live with myself if I do that?  Don't get me wrong-I'm pro-choice, and I remain firmly so.  But I believe the choice is up to the individual.  I've seen the heartbeats.  I've seen the swimming.  I've seen the moving and growing.

And above all, I've completely fallen for my little guys.

At this point, do I feel "the choice" has become something exclusively for other women, and not for me?

I know it seems crazy that we're thinking this much about something that simply reflects the odds.  The odds are we won't have a Down's child.  But when you go from low-risk to high-risk in the space of a half-hour ultrasound then it does something to your thinking.  The odds of miscarriage are relatively low-if I have a 2% chance of miscarrying anyway through the rest of the pregnancy for whatever reasons (genetic defects, cords cutting off air, the sun being in Sagittarius), then is adding a one-off 1% really so dire?  If most clinics have stellar rates of success for not miscarrying (I've seen anywhere from 1:200 to 1:5,000), why does the UK quote 1:100?  And are the rates worse for twins, who have a higher "average" miscarriage rate anyway?

I always knew that infertility was a roller coaster.  I think I stupidly and naively though pregnancy would be a cake walk compared to those early days. I hereby beg forgiveness from the universe.

So my answer is I don't know what we're going to do.  Aidan is keen for us to do the amnio, and he is my partner and the father of our children and his wishes and fears register high with me.  I fluctuate between thinking we should do an amnio and thinking we shouldn't.

The one thing I do know is that if something happened to these babies I would fall apart.  I'm not trying to be Alexis Carrington about it, but I would honestly need to be checked into some kind of facility for a while, because I wouldn't even be able to follow my bubbles to determine where the surface is anymore.  I know it seems crazy-I was freaked out that we're having twins (and I still am, really), but they are a part of my life now.  I don't want to lose them.

In my heart of hearts, I truly and completely believe we are carrying two normal, healthy babies.

But if I am wrong, then the change to our lives will be so monumental as to oblierate what the face of it once looked like. 

Lots to think about.

I'm officially about a third of the way through my twin pregnancy, and already the Lemonheads (the name is perfect, Donna) are so hugely important to me it makes me swell up like a Hallmark card.  Feel free to barf at the sweetness.  I know I will.

I created this website to be private, to hide my fertility treatments and my failures and successes from my mother and sister, so that I could feel like I have a calm and private place where I'm not constantly being read (yes, I am putting things on the web, but I am using pseudonyms all over the place and you'd have to actively look for me to find me).  My mother and sister have apparently felt that my needs and wishes are irrelevant to their own, and have (I have discovered) been reading this site anyway.  So fuck it. 

And people wonder why I'm in therapy.

Comments

[thalia]

I'm sure no one will beat you up (hear that, everyone?), but I do wonder what the possibilities are at that stage for reduction with twins, I'm really not sure.

I'm with you, Vanessa, I really think you have 2 healthy babies in there.

Given you are not sure you want the amnio, I really think your best course of action is to get an appt w the prof for next weds (he's only in the clinic on weds) as they check much more than the nuchal fold, so you will get a much better risk estimate - with their data, the blood flow in the heart and the nasal bone are all parts of their calculation. You would then at least not be having the amnio based on one, less than indicative measurement. The nuchal translucency alone gives at least a 5% false positive rate.

http://www.fetalmedicine.com/11-14scanbook/Chapter1/chap01-3.htm

Good luck whatever you do, we'll be here supporting you.

[Foggy]

for what is worth I support your concerns re: Down's well above the 110% level. Your concerns reflect a well reasoned, concerned and compassionate thought process.

Your thoughts re: CVS are likewise sound.

Good luck.

[Mina Wolf]

First of all, This decision is so completely up to you and Aidan. I really don't think (my personal opinion only) anyone should be telling you what to do. The decision for an amnio, the decision on what to do with the results, everything. I will tell you that the relief I felt once I got the results from mine was more then any drug induced high (granted my experience is limited, but still). For the first time in my entire life I cried from happiness. I know who I am and I know I could never have lived with the uncertainty. In a way I'm happy that my husband felt the same way because I kinda left the final decision up to him.

As far as the risk being different for amnios on twins, I wouldnt' be surprised. It makes perfect sense why the numbers you were quoted are different. But I do think that the previous post's commenter might be right. About them taking all the previous attempts into consideration when giving the odds.

You're not alone in your feelings of utter desperation in keeping your babies safe inside you. I'm so sorry you're having to go through this.

[Karen]

I'd go for that second opinion, since (as Thalia points out) you're not certain you want the amnio anyway. As far as I understand it, reducing one at that late stage is tricky at best, though for the life of me I can't figure out why it would be any trickier than doing it earlier.

re: CVS, you said, "CVS wasn't offered, but the miscarriage rates for CVS are higher anyway, so I think maybe it's better if we don't do that one."

You've still got a little time for CVS if you want to push the issue. What's interesting is that the miscarriage rate for CVS is slightly higher than amnio for SINGLETONS. Apparently, with twins (and above) the risk of miscarriage with CVS vs. amnio is identical.

I don't think anyone will attack you for your views. They are honest views. You feel the way you feel, and no one can take that away from you.

I'm with you on the strange mix of emotions... I didn't really have any idea how attached I am to my trio of parasites until yesterday when I thought I might be losing one. I've spent so much time being freaked out about the triplet thing that I didn't realize that I'm quite attached.

[wRitErsbLock]

I'm still thinking all the happy thoughts I can in your direction.

You do what's right for your family. What your readers think is irrelevant.

[Steph]

If your baby does have Down syndrome, you can always give it up for adoption. There are waiting lists of families that have had such a positive experiance with either a brother or sister with DS or a cousin etc.

I am sorry to hear that your friends who have children who have DS are so negitive about it. My friends were honest about it, but not that negitive.
This has not been my experiance. My Samantha ( 19 months) has DS. she is the youngest of 6 children. My kids love her and basically.. she has been just like my other babies.. just a baby a bit longer. She is learning to walk at 19 months. BUT she is walking.

I am not pro choice, I am pro adoption. It is more work to have a child with DS. But I have to say I have enjoyed being with Samantha and taken her milestones with great pride. I am not trying to pressure you to raise your child. But please dont consider reduction termination. I know many families like our family would love to adopt another child with ds. I do wish and will pray for you to have a happy and healthy delivery. ~ Steph

[amy t.]

"In my heart of hearts, I truly and completely believe we are carrying two normal, healthy babies."

You seem to have incredible gut instincts when it comes to your insides, babe. You knew you were pregnant both times just days after implantation. You knew in your heart of hearts that things were working. You were so sure, and you were so right. Don't start discounting your instincts now.

[Michele]

Our views on the situation are very much the same. I know that every decision right now is a very tough one that needs to be thought out a great deal. I think it's great that you're educating yourself as much as you can (hopefully without scaring yourself too much) about what the possibilities are.

Grrr to your mom and sister for not respecting your space.

[Teresa]

There are so many things I want to say to you. First off, no one is going to beat you up for the way you feel. I do not have a Down's baby, but after years of working with Downs kids, I can honestly tell you I have often thought of the difficulty the parents must face. It is truly something that is yours and Aidan's alone to share, since you are the ones who will be raising the children. It is good and right of you to think of Aidan's kids, and this is your family-and you need to do what is right for your family.

Go ahead and get a second opinion-this is your body, your babies-do what you feel is needed. You might be surprised at what another doctor says, and if another doctor gives the same diagnosis, then maybe that might shed a whole new light on it for you-you never know, so why not give it a go?

And to Steph-perhaps your heart is in the right place, and I give you much respect for your choices in life, but remember-they are choices. I do know that once those hearts are beating inside you, things are very different in the world around you. I am pro-choice, whole heartedly through and through, but as dumb as it sounds a few years back a very close friend had an abortion. I cried as a knee-jerk reaction. Now, the sensible part of me knew she was not ready to have a baby, that even carrying out the pregnancy and putting the child into adoption was not even an option for her. I knew she made the right decision for herself. But my 'mother's heart' made me cry. I was so pissed at myself for doing that, and for getting so damn upset-I am pro-choice, so why did I get so sad so fast? I still don't know, but what I do know is that I am more pro-choice then ever. These things are not black and white, not things to be discussed among men in suits on Capitol Hill, but personal, private feelings and decisions.

I respect anything you do-this is your body, your babies. Of course I hope all is well, and I agree it is a good sign that deep in your heart you feel that you have two healthy babies. I believe they call it a mother's instinct. ;-)

[Ms. Pants]

So I work with a guy whose wife had a baby last year. From the get-go, it was "high risk" this and "uh oh" that. They started out by telling her the baby might have a club foot. Then it was Down's. Then it was this disease, then that disease. By the time she was 27 or 28 weeks pregnant, they were saying "Well, the baby might not be suitable for life." Essentially, they were saying she was going to have a baby only to have it die in a matter of hours.

After all that hell, little Kate is the most gorgeous little baby girl I've ever seen. And she's perfect. She has been since moment one. (I'm trying to convince her parents to let me arrange a marriage between her and Meesito.)

Because the doctors were trying to give her the worst case scenario the whole time so that she'd be prepared, she wound up not really bonding with the baby for the first few months. She was so traumatized from being told the baby was going to die that she had somehow detatched. (This has changed--they're thick as thieves.) She's 99.9% sure she will never go through pregnancy again because of these doctors.

Sometimes I wonder if all these tests and odds are really doing more damage than good.

[kim]

Ms. Pants has hit the nail right on the head. Never in a million years would I fault you or flame you for your feelings or decisions regarding this matter -- those are YOUR choices, and Aidans, and no matter what you decide that choice is to be respected by your friends, IRL and on the internet.
That said, I do think a lot of these tests do a lot more harm than good, and they CERTAINLY are no panacea. Because I know a woman who's tests were normal, low risk, yadda yadda, and her beautiful baby girl was born with Down Syndrome.
When I was pregnant with our now 1 year old twins, DP and I decided that we would not do any invasive testing because unless an u/s showed something that was going to cause the carrying of one twin to harm the other or me, we weren't going to do anything with the information. It's hard enough to enjoy a pregnancy after infertility has struck your life.
I wanted to say one more thing -- You mentioned having a DS baby would be "...the change to our lives will be so monumental as to oblierate what the face of it once looked like." Having children, one, two, or 10, changes the face of your family and your lives and obliterates what it once looked like REGARDLESS of whether one of the children has DS. But a child with DS changes the face of what you THOUGHT it would look like when you had kids. I think there's an important distinction, because if you think having healthy kids doesn't change your life you might be setting yourselves up for some big frustrations.
Good luck with whatever you decide.

[Vanessa]

Kim (the second Kim!) - I should have been clearer. We do absolutely know that our whole life is going to change with twins (just as the whole life would change with just one). But you're right-how we THINK it will look after twins is different of how it will look if we have a twin with Down's.

Don't worry. Even though Aidan often accuses me of wearing rose colored glasses, I'm under no illusions that life will be easy, nor do I think I'll ever use the toilet in private again.

[Sarnie]

Hi Vanessa, I can't do a long post telling you what I would do in your situation as I honestly don't know. Everyone copes differently, as your readers posts show. Just wanted to say...... You and Aidan WILL make the choice that is right for you and that will be the RIGHT choice.
Also, so very sorry that your Mum and Sister have found and read your blog.

Good Luck and thanks for FLICKR x

[Teri]

Seriously, they found you again? Seriously? Those are some snarky b**tards you have stalking you. Sometime you'll have to elaborate on why you're estranged.

[Kath]

Dear Vanessa, that is such a tough decision, and I'm so sorry you have to make one with so little information to go on. Those screening tests can be so frightening.

I would also see about getting another scan later, before making the amnio decision -- it was utterly amazing what the prenatal specialist could see last week, when I was 15w4d.

And if you do decide to do the amnio, I can tell you honestly that mine (the day before yesterday) hurt less than most blood draws, and it was over in a flash. And there was absolutely no cramping afterwards. I'm of course not carrying twins, so I can't offer any insight on that aspect, but if you want any more details or have any questions on the procedure, please drop me a line.

And I don't know if I simply missed this, but could they theoretically just do the amnio on twin 2, thereby reducing the risk back down to the singleton number? Or doesn't it work like that?

[Judi]

I haven't read the comments extensively but you look skinny to me. Maybe I'm just a fat American ;-) I had my singleton in Oct 2006 and I'm giving myself a year to lose all the weight. Best of luck with your decision. Trust your instincts.

[BeachGirl]

You use the toilet in private NOW? And you own a dog? Clearly I'm doing something wrong.

I wish you luck on the hard decisions you face (and they are very hard, even if things turn out to be fine). And I loved amy t's comment.

Sorry about the family-stalkers. Wish they could learn about boundaries and let you get on with your life.

[watson]

Vanessa,

I'm betting that your gut instincts are correct, and both of the little babies are just fine.

But I can't imagine how stressful this all must be for you.

I'm sending you good, positive thoughts that it's resolved soon and that you can enjoy the remainder of your pregnancy.

Much love to you!

[Ms. Pants]

^^^hahahaha! Yeah, I have cats and there is no lone toilet use. EVER.

Honey, try getting a second opinion. It's worth it.

And whatever you decide, guess what? I'm still gonna love you and zerbert your belleh.

And I think Mama and Sister are directly on par with the Swunt. Perhaps you were born into the wrong family? With family like that, I'm amazed you blog at all. What small, small lives they must lead. What small, insignificant, worthless humans they are.

[caltechgirl]

I think you must go with your gut on this one. If you feel you'd like a second opinion, it wastes little more than your time and some money to get the same answer, and you are best served by whatever puts your heart at ease about your little lemonheads.

WRT the amnio, if you decide to do it, I hope that you and A are on the same page about it entirely. I would hate for something to happen and the two of you to turn on each other because of difference of opinion.

[Lut C.]

Let's be honest here, is there anyone here who can claim they woke up one morning thinking - you know what, I want a baby with Downs? I hardly think so.
So it raises questions, valid hard questions.

I talked to a midwife about testing or not testing. Her advise was, if you already know you're not going to act upon the knowledge, don't test. Don't run the risk.
If it's not even possible to reduce one, perhaps testing isn't worth the risk either?

I find those small risk factors hard to forget too. After all, the odds that one would need ART AND have to go on to IVF aren't that big. Having experienced falling on the wrong side of small odds before, makes me see no reason why it couldn't happen again (knock on wood).

No one can decide for you. I hope you find a decision you are at peace with, if not immediately, then in the long run.

[Lut C.]

Just been reading your comments, seems like I'm wrong.
My apologies if I've offended anyone. The diversity among people never ceases to amaze me.

All the more reason for you to disregard anything I say completely.

[statia]

My mother never told me that old addage "if you don't have anything nice to say, don't say anything at all." But you know, I'll take the high road here regarding the family. Because I'm nice like that. (that and well, there's always the private talks, and they make me feel better).

Regarding the downs. Honestly, only you two know what's best for you. And there's no wrong decision, despite what people are going to say here, and even though, they're "not judging" you, they're already right up there with the sage advice.

No matter what you decide, you know I'm here for you. It's a very hard place to be in, and no matter what, you have to do what's best for both of you. Fuck everyone else. I have no sage advice.

[carey]

I agree... trust your gut & do what is best for your family. Regardless of your decision, someone will always pass judgment... human nature unfortunately.

I am the type who needs to have all the information... so I would most likely do further testing to either decide to abort or be able to prepare for a special needs child... but again, that's just me.

Hang in there...

[Ms. Pants]

::: sings :::

Statia will take the high road, and I'll take the low road and ....

...and neither of us will get to Scotland because we're on the wrong side of the poooooooooond.....