Thursday, April 05, 2007

Pictures and reduction discussion


This was the scan done at my last Shady Hell Appointment. Three sacs, three heartbeats, three of everything. Dr. Amazing was positively adamant that I must schedule a reduction. I understand to him triplets and high risk pregnancy equal failure. For that matter, I'm not so thrilled about having a triplet pregnancy. I wish I could have nothing but happiness over it, but I can't. I'm still worried about it. I'm happy that I'm pregnant, but I'm worried about the risks and hardships associated with triplet pregnancies. That being said, I don't know that I agree with Dr. Amazing's assessment that a reduction is the only logical option. I'm not even terribly convinced that it's the best option. It seems that no one wants to talk about the risks associated with multifetal reduction, but they really shouldn't be discounted. From what I've seen, the risks aren't insignificant and the studies I've found haven't suggested that the benefits of triplet reduction are significant enough to overcome the risks. (The benefits of quadruplet reduction to twins or less are stacked significantly in favor of reduction, but it is less clear with triplets)

What I didn't realize was how quickly I could get attached to the little parasites growing inside me. Nor did I realize how quickly they grow! In six days the growth was tremendous.

See how squished up against each other they are now? This isn't as clear a picture because it was transabdominal, so you can't see the little fetbryos inside in this picture, but you can see that the sacs were spaced out before and now they're all squished together. This scan was taken at the perinatologist's office on Monday. It was a very long, detailed scan made more difficult by the fact that I absolutely could not manage to empty my bladder enough to see Baby C with a transvaginal ultrasound (but all other views were much clearer). We could very clearly see the hearts beating, whereas before I had to squint and pretend like I saw that random blinking on the screen. Now it's very obvious and impossible to miss. Like I said in my last post, the heart rates were 171, 171 and 168. Baby C is measuring three days behind, which I understand isn't a terrific sign at this stage, but I didn't get a really straight answer about what the ramifications of that size differential really are. At the NT scan, I'll be seeing the head of the practice, so I'm hoping for more clear-cut answers.

The more I think about it, though, the more annoyed I am about my visit to the perinatologist. I didn't get to think about it much after the appointment, because we had a houseguest for the first days of Pesach, and I had other things on my mind. Now that I've had some time to think, I'm seriously annoyed. On the one hand, the doctor took a lot of time with us and answered a lot of questions. She even told me that there are some neuroleptics that I can take for migraine prevention. I'd previously been told that all neuroleptics are out because of risks of neural tube defects. I'm not sure I'm willing to take that tiny risk, but it was nice that she suggested some options. She calmed my fears about the bleeding and cramping and suggested that both are normal, particularly with higher order multiples. She said that the triplets they follow do very well.

That being said, she was most definitely in favor of reduction. Now I could be all about that position if she'd given me some specifics that I could really work with to get on board with her, but she really didn't. She gave me some generic statements about how uncomfortable I'll be with a triplet pregnancy. She talked about how twins deliver later than triplets, which is of course a good thing. She talked about the fact that there's a lower incidence of IVH with twins than with triplets (though the statistics I've found haven't been terribly compelling). She mentioned that the generic risks of pregnancy are lower with twin pregnancies than with triplet pregnancies. What she did not talk about at all was the risks of multifetal reduction. In fact, I have a hard time finding much literature on the risks, but there are associated risks. The risk of total fetal loss, for example, seems to be at best 3-5%. Not high, no, but it IS a risk. Some studies, in fact, put the rate of total fetal loss (miscarriage) at closer to 25 to 30%. That's nothing to ignore.

Then there's the question of real benefit. Average triplet pregnancies go to 32 or 33 weeks gestation in the US, depending on whose figures you use. Average twin pregnancies go to 36 weeks in the US. Triplet pregnancies reduced to twins still carry a higher risk of preterm labor than do natural twin pregnancies. Average gestation for triplets-reduced-to-twins pregnancies is 34 weeks. This is a significant and critical week, but the difference isn't as drastic as the shift from quadruplet vs. reduced quadruplet (to twins) pregnancies. Not even close. If I had quadruplets, this wouldn't even be a discussion.

As for my specific medical concerns, yes they are factors. In particular, the hole I have in my heart is something that should be monitored. But it doesn't appear to be a deal-breaker. Turns out my OB isn't crazy with regards to the whole short factor either... I found one study in which the conclusion stated: "The taller patient (>165 cm) may be at a significantly lower risk of very low birth weight neonates and very premature delivery as compared to the shorter patient (< 165 cm). Therefore, the factor of maternal height may be taken into consideration in multiple gestation pregnancy consultations." (I'm about 152 cm short) My husband is going to pull the full article from the medical library at work tomorrow. And yes, if you pile everything up together, there's a decent argument for reduction given my specific medical factors.

But I also think there's a rather significant argument against reduction and that's a discussion no one seems willing to have with me. I'm almost to the point of finding another perinatologist, except that when asking ANYONE for perinatologist recommendations, this practice is the name that ALWAYS gets brought up. The head of the practice is also the head of maternal fetal medicine at both of the hospitals that I would want to deliver at. They are arguably the best maternal fetal medicine practice in the area. But I'm still squeamish about them for some reason. I feel like my care there would be excellent no matter what decision I make, so it's not a question of my care, really. It's a question of why no one will have a discussion with me about the other side of this argument. That being said, my husband is checking with one of the nurses in the NICU at his hospital to see who she would recommend as a maternal-fetal medicine specialist, so I can get a second opinion. I intend to receive my care from the office I've already been to, but I'd like to have a consultation with at least one more doctor to see if I can get some straight answers.

The problem, of course, is that I'm running out of time.

19 comments:

malky B. said...

wow! It sounds like your being very thorough - that's always a good thing. A second opinoin is always a good idea.

Adrienne said...

Definitely get a second opinion so you can hear the other side of the coin. Then you can make your decision. Because it is your decision. Not Dr. Amazing's, not the perinatalogist's, but your's. Good luck.

kirby said...

This is obviously a very complex issue and I don't want to make it sound as though I can give decent advice when I clearly do not know all the details...

That said, I was pissed when I first read the peri entry since it seems as though the peri only wants to push an agenda.

I get it. It would be easier if you weren't pregnant with trips. But you are. And so far, so great. So they should be going out of there way to get you the information you want (risk and potential benefits of reduction) instead of talking you into their way of thinking.

Is is just me or do a lot of infertiles feel like were generally underestimated when it comes to our own knowledge of the issues at hand? Do these docs not know how Google works?

Okay, back off the soapbox.

Rona Michelsom said...

As a marraige and family therapist I have been confronted many times with people who have gotten "advice" about what they should do with their lives. I tell them this: consider all of the information you are given and MAKE YOUR OWN DECISION! YOU are the one who will be living with the consequences of your decision. Everyone else goes home to their own lives, but you are the one living yours. Gather the information and then weigh it. Run the scenarios the best you can and see what each decision might feel like for you.

Years ago when I was pregnant with my third child my doctor told me that he was pretty certain I had had rubella early in my pregnancy. Always (until I was in that position) I had "known" that in that position I would "definitely" abort. Well, when the decision looked like it was upon me, all I could think of was this little defenseless embryo who had a chance of being less than perfect-- but how could I hurt it? I would have chosen NOT to abort. In the end, the tests were inconclusive and the baby was born perfect (well, OK, a little feisty!) and now he is the father of six children.

The point is that no one can make this decision for you and no one has the right. They do have the right to give you accurate information and to be supportive in terms of listening to your concerns and answering your questions.

I wish you only success and happiness no matter what you decide.

Tortuguita said...

I just came across your blog.
Wow. First of all, I just have to say that I wish all expectant parents were so totally dedicated in educating themselves like you are. This is such a difficult thing to be having to go through and a tremendous decision to have to make. I don't envy you, however, from everything that I've read so far, if anyone is capable of making a truly well-researched and thought out decision, it's you. Again, I wish more people had the kind of initiative and presence of mind to question their medical professionals and to not allow themselves to be intimidated into not finding their own information. Kudos to you.
And know, that whatever decision you make - it will be the right one.

triLcat said...

Wishing you all the best. This is a rotten position to be in. They already look so cute...

Twisted Ovaries said...

I think trying to get all the answers and see how YOU feel is the best thing you can do. The stats are scary anywhere you turn-tall, short, 3, 2, reduction, carrying them all, history or miscarriage, assurance that the three you have are strong and of course there is a risk that with reduction you could miscarry them all (I'm sure you know all this, sorry to make it seem worse). There is no clear path here. What your peris are saying is probably based on medical fact, but there is of course the other fact that a lot of triplets are born and make it fine.

Doctors in general freak out about multiples-I'm only having 2 and I swear my doctor spends his time shouting "HIGH RISK!" in all available spaces. I take their point, and I see why it's frightening, but it's not as easy as "just reduce" for the woman carrying them. There are so many factors to take into consideration.

I'm around if you need to vent.

Marie-Baguette said...

I am sorry you were not able to get answers from your doctors. I am not sure were you live but I can recommend Doctor Stone at Mount Sinai in NYC for a second opinion. You still have plenty of time -- reductions are done at week 11-12. You have to think about CVS and if you want them. CVS are far less risky than previously thought. Thinking of you

Marie-Baguette said...

PS I realize that my last comment reads like I am in favor of reduction, which I am not. It all depends of the risks, and as you said, it is really difficult to know the risks for triplets. I believe that if I had had non-identical triplets, I would not have reduced. Apparently there is a huge number of triplets in New Jersey, so you might find lots of resources in this area.

Erin said...

Maybe the neuroleptics are safer now because the neural tube is pretty much formed within 4 weeks after conception (I just taught this to my anatomy students last week), and you're right about there now. I'm not sure what further risks there are since there's a lot of development after that point, that's just my best guess.

I think a second opinion sounds like a very good option at this point. There must be other perinatologists in the area who aren't associated with either the first or Dr. Amazing. Maybe your rabbi can recommend someone? Are there other people in your shul who've had multiples?

This is incredibly difficult for you. I wouldn't be all sunshine and light, either.

Anonymous said...

Thinking of all of you.

Kris said...

Gosh, we all hope to hit the IF jackpot, but then that is rife with an entirely new set of complications. I agree a second opinion is a good idea... I think doctors owe it to their patients to discuss all the pros and cons of whatever they suggest. I'm sorry you are faced with such a difficult decision.

Anns said...

go with your gut - you ultimately have to live with whatever decision you feel is best for you, your health and your babies. You seem to be informed, so do what feels right for you.

We got your back no matter.
xo Anns

decemberbaby said...

We actually had the "risks of reduction" conversation with our RE the other day (my DH likes to get ahead of himself and wanted to know why we're working so hard to avoid multiples). She pointed out that it's not a case of taking out the least healthy embryo, but of taking the one that is closest and least complicated to remove. She is also against reduction because of the emotional impact it can have on patients. Also, she pointed out (as you mentioned) that many of the risks remain whether or not you reduce... i.e. your body still thinks of it as a triplet pregnancy.

As a devil's (or angel's) advocate, I just want to say that we already know that science doesn't actually control what happens to our bodies. Doctors can only do so much, and then there's the part of life that's completely out of human hands. That's why life is miraculous and impossible to predict. Just a thought.

As everyone said, it's your decision. I'll be reading and supporting you no matter what!

The Town Criers said...

Sometimes I feel like all the offices in this area have a company line that they stick to regardless of individual circumstances. They have certain way of doing things and they push those ways and don't seem to want to discuss any other possibility. I certainly found that with my old OB and one hematologist (and both are at the same hospital as your MFM specialist! Maybe it's the hospital). I definitely think calling the NICUs and asking who else they see beyond that practice is a good idea. That's how we found our OB for our twins (who is not high risk). The NICU nurses know so much and hear everything.

Anonymous said...

It sounds as if the stats the perinatologist is giving you are the stats for triplet pregnancies vs. twin pregnancies. *Of course* triplet pregnancies are statistically higher risk than twin pregnancies that have been twin pregnancies all along! You are very smart to note that what you need to be comparing are triplet pregnancies vs. triplets-reduced-to-twin pregnancies. This perinatologist is ridiculous for not doing the same.

You are right that there are significant risks associated with reduction and that a reduced-to-twins pregnancy remains higher risk than a regular twin pregnancy. You seem to be quite correct that risks of continuing vs. reducing a triplet pregnancy generally come out pretty much even.

An informed opinion should be supported by specific reasons for the opinion and should be formed only after having also weighed arguments against the opinion. The perinatologist didn't seem to do this, and therefore her opinion to reduce seems almost as alarmist as that of the RE. Whether or not the conclusion is correct, her opinion feels untrustworthy. That she isn't giving you straight answers is irresponsible.

It is totally understandable that the appointment with this perinatologist left you with a bad taste in your mouth and you are not eager to return to that practice. I'd be annoyed, too.

SaraS-P said...

You are definitely doing your research and taking this decision seriously. Whatever you decide, it will be the right decision for you.

Linda said...

Hi,

First: congratulations! Second: go you for being an informed patient. That is awesome. Third: Head over to Raising WEG http://raisingweg.typepad.com/ She has a category entitled "Selective Reduction" in which she looks very carefully at studies and data. For the record, she did not reduce her triplet pregnancy and her kids are in kindergarden now.

Jody said...

This is an agonizingly difficult decision, especially given your health situation.

Because it sounds like you want to talk to a pro-triplet-pregnancy MFM doctor before making your decision, I recommend you contact MOST (they're in Long Island) and/or the Triplet Connection (they're in Utah) to get the names of some DC-area peris who have lots of experience guiding HOM pregnancies to delivery. The websites are www.mostonline.org and www.tripletconnection.org

Both organizations are biased toward continuing the pregnancy. However, they do at least acknowledge the medical stastistics that are available. The TC has a medical advice board comprised of doctors who aggressively manage HOM pregnancy. MOST may have more knowledge of east-coast doctors (or not). Both groups have local coordinators who may have lists of local doctors.

If you're looking for an anti-SR second opinion, these are the places to start, I think. Even the most anti-SR MFM in your area is likely still to do SR and to be able to give you an honest assessment (to the best of their ability--which given the level of the stastitical knowledge, isn't high) of your particular risks.

Congratulations on your pregnancy. I don't envy you the decision you have in front of you, but after it's made (however it's made), I wish you a safe pregnancy and a healthy delivery and a fantastic life with multiples.