1st appt with peri

well ill be 15 weeks monday and im goin to see ther peri for the 1st time.So far no one has found a dividing membrane so he will probably look for that. But is there any questions i should ask or will he just tell me everthing?Im so happy im goin but at the same time im so scared, i just dont want any bad news..

 

I won't see a peri until my 18-20 week scan but I'm looking fwd to it. My regular OB will have me seeing the peri every month from that appt on unless there's a complication. I will really miss being able to see them at my OB's office every two weeks though Let us know how it goes!

 

With my peri the ultrasound tech comes in first and does an ultrasound, and then my peri comes in and does his own. The tech actually explained alot to us about what she was seeing (I have been to the peri twice so far), and then the peri came in and looked around, asked if we had any questions, and then told me anything I needed to know. I'm sure he will tell you anything that he sees that would be of concern, but if you have questions that he isn't answering then ask away!

 

I have copied this list from another site. Have you been to the monoamniotic.org site? I has a wealth of information. Good luck on finding that membrane!

Experience. How many other patients has he had with momo twins? What were the outcomes?
Familiarity with research. Has he read the most recent research on management of momo twins? You might want to bring Dr. Heyborne's study and/or the Rodis study with you as an example. If you want it, email me and I'll get it to you. The Heyborne study was published almost exactly a year ago, and it has truly revolutionized the care of momo's. If he hasn't read it, he needs to!! If he gives you an attitude about "I don't need to read any of that, I already know it all!" then start looking for another peri!
Management plans - what kind of plan does he recommend? Most of the rest of the questions relate to this issue.
When is viability? The majority of your management plan doesn't kick into gear until you reach this point, so determining when you want to consider the babies viable is key. Get his thoughts on this matter, but this is ultimately something you need to decide. You need as much info as possible, but in the end, you're the one who will have to deal with the effects of that decision, so you need to have the final say.
NST Frequency. How often does he suggest doing Non Stress Tests once you pass viability? With the evidence from the Heyborne study, this should be at least 2-3x a day in the hospital. But absolutely, no matter what, no less than once a day outpatient. And I'd only accept that if I'd tried every other doctor I could reach, and that was the best I could get out of all of them. With Heyborne, docs like that are getting to be more uncommon, so hopefully you wouldn't have to look too far to find one who believed in it.
U/S frequency. There's no consensus in the medical community on how often these should be done. The TTTS Foundation recommends once per week past 16 weeks for all twins who share a placenta - regardless of whether they have a dividing membrane or not. What's more common is once or twice a month until viability, and then a minimum of once per week. But like I said, there's no consensus here. It comes down to doing what makes you feel like you're doing all you reasonably can. Like NST's, I lean towards "more is better" but don't have anything specific to back that up.
Will he do Dopplers? This is a special type of u/s where they can look at the blood flowing through the cords. So it's obvious why this is important for us. The answer ought to be "Yes, every time I do an ultrasound." There's no reason not to, and every reason to. If he doesn't know what Dopplers are, and/or is skeptical about doing them, it's time to find another peri.
Hospital Admission. Comes back to the Heyborne study again. The benefits are many, and it's hard to argue with a 100% success rate! Even though you can't expect 100% all the time, it's obviously a MUCH better option than 2-3x per week outpatient - which only showed an 88% success rate. We've even seen a few losses in someone who was inpatient, but the biggest key to the monitoring is paying attention to it! If you're doing the monitoring, but not looking at it, it's not going to do you a bit of good! But even then, sometimes something happens that no one understands. There are no guarantees. But this is about as close as you can get. Even though 12% losses still looks great compared to the 50% most doctors quote, if I could get nearly 0% by being monitored inpatient, you'd better bet I'm packing my bags!!
Steroids. When and how many. This is another controversial point. This is worth its own FAQ. Without getting into details right now, the issue is whether you get only one series (in which case the next issue is "when?"), or you get two series - one at viability, then hold another one in hopes of being able to give it to you within 24 hours to 7 days of delivery.
Sulindac. This is a drug that is being used experimentally to reduce amniotic fluid in hopes of reducing movement, and thus cord entanglement and compression. There is one study, done by a group in London, that has had good results. This group still uses Sulindac, and has continued to have good results - but hasn't published again. Not many US doctors will consider it, because it hasn't been studied a lot. The existing evidence shows good results, with no serious side effects, but there's always the worry of long term side effects both on the mom and the babies. It's actually an NSAID like ibuprofen, but it has the side effect of reducing kidney output - both the mom's and the babies'. Since amniotic fluid is mostly urine, taking Sulindac reduces fluid volume. They have to monitor it closely to make sure it doesn't go too low. If it's something you'd want to consider, bring it up to the doctor and see if he's open to it.
When to deliver? This is a biggie! What's his goal? 32, 34? Farther? If he plans to try past 32, talk to him seriously about an extra-agressive monitoring plan past that point. Recent research shows that the risk of death rises with gestational age past 32 weeks. So with rising risks, the benefits of keeping them in gets to be harder to balance. Only very aggressive monitoring (to me, it would mean continuous or near-continuous) can help to outweigh the increasing risks. I'm personally a fan of 34 weeks, but ONLY under very intensive monitoring. And not everyone shares my opinion! Quite a few people believe that once you make it to 32, get them out while the gettin's good! There are advantages to a planned delivery at 32 (with steroid backup) versus a distress/emergency deliver at 32, 33, or 34. This is a VERY tough call, and on you have to make for yourself. Listen to your heart is the best advice I have to give.
How to deliver. This is a trick question. The answer should be "c-section" period. No "well, we'll see if the babies are head down, and if they are and all is going well, we might try a vaginal delivery..." A vaginal delivery is an unnecessary risk. Back to the risk vs. benefits equation - there are no benefits even close enough to outweigh the risks. It's a no-brainer. C-section is the safest and only way to go.
Where to deliver. Which hospital does he admit to? If it doesn't have a Level 3 NICU, you'll need to seriously talk about finding another peri who delivers at a hospital that does have a level 3 NICU. You may not need it, but if you do, having to fly the babies - who might be in critical condition - to another hospital, and leaving the mother behind is something no one wants.

 

This is a link to the questions recommended by the TTTS Foundation for all monochorionic pregnancies: TTTS questionaire