Things to ask your doctors

Once you receive the initial monoamniotic diagnosis you will probably have a thousand questions running through your head... but when the time comes to ask the doctor some questions you'll probably forget them all!

Here are a few things to ask your doctor(s).  Your OB should refer you to a high risk OB (Perinalogist/MFM (maternal fetal medicine) so many of these questions are ones you will ask the first time you meet with your Perinatologist/MFM.  Some questions are ones that you will ask when you are further along with the pregnancy.

1.  Which Perinatologist /MFM practice do you recommend?
2.  When can I get a high resolution (level II) ultrasound to get the momo diagnosis confirmed?
3   What is the standard practice of care for momo twins?  How often will I be seen for an ultrasound? When and where will I go inpatient?
4.  How often will I receive ultrasounds before I go inpatient?  How often will I receive ultrasounds when I am inpatient?  What will be looked at during each ultrasound?  Organ development? Cord flow measured through dopplers?  Growth measurements?
5.  Can I still get pictures/videos of my ultrasounds? (some of us didn't get many pictures/or any videos because the ultrasounds... we wished we had more pictures)
6.  Is it possible to get a 3D ultrasound? (We've seen some awesome 3D ultrasounds from momo twins...  it was never offered to some of us though but may have been a possibility).
7.  What is the outcome for babies of each gestational age (you may want to meet with a neonatologist to discuss this).  What are some typical issues you know of for preemies at each gestational age?  This will help you make your decision on when to go inpatient (see #8 below!) as well as delivery (see #10 below!). 
8.  When do you recommend going inpatient? (24 to 28 weeks is "standard” in the United States and Cananda, other countries protocols vary but many in the UK and Australia have successfully fought to go inpatient).
9.  What will my day consist of when I am inpatient.  What will my monitoring be like while inpatient?  3x a day seems to be the most common but there are other variations including continuous monitoring or a NST every 2 hours.  How often will I receive ultrasounds while inpatient (either to check cords or for growth measurements). Ask if your doctor can write an order so you won't be bothered in the night for vitals' checks and ask if you can get a waiver on the heplock and blood draws.  Will you be able to go for short walks while inpatient? Any possibility of leaving the hospital for a couple of hours once a week or at least getting outside?
10.  What gestational age do you recommend delivery? (32 to 34 weeks is pretty "standard" for momo twins... more on this in another post!).  If things look good at 32/33/34 weeks will you consider taking it on a day by day or weekly basis to go a bit further?
11. What will require an emergency delivery?  A dip in heartbeat for one twin to below 90BPM for 5 or more minutes?  3 or more decels below 100BPM in an hour period?  Cord flow being compromised?
12.   How will the c-section go? (many of us did not know anything about c-sections prior to having our babies... this would have been something great to know before delivery!  One thing to ask is how you will be sutured ~ with staples or sewing?)  Who can I bring with me in the delivery room? Can I have my spouse/significant other/friend take pictures of the cords (great memory down the road to have a picture of the cords!).  What type of anesthetic will I receive? What will determine whether I receive general anesthesia or a spinal?
13. Will I receive steroid shots?  How long does a dose of steroids last and if I receive steroids when will I get the shots?

14.  Where will I deliver and what is the quality of NICU there?

15.  How many momo twin deliveries have you dealt with in your career? In the past 5 years? What were the outcomes for the momo twins you cared for?
16. What is the CVS test and an Amniocentesis and would you recommend those? What are the risks?
17.  What are the odds on finding a membrane later on?  I’ve heard membranes are often found up to 20 weeks or so. If a membrane is found later and my babies are modi, what does that mean for my care and my babies? How is that different than momo?
18.   There’s a study that shows “Sulindac therapy reduces AFI (Mean Amniotic Fluid Index), leads to more stable fetal lie, and may prevent intrauterine death by diminishing the risk of constricting cords that are already entangled.” (http://www.ncbi.nlm.nih.gov/pubmed/17001748)? Is this something to consider? What are the benefits/risks?

19.  How can I give my babies the best chance?  What diet do you recommend?  DO you recommend extra protein and if so how much? What are your thoughts on activity level; is daily exercise ok? Can I keep working?
20. Is there any new research on the care of monoamniotic pregnancies?   Any new standards of care as far as inpatient stays and monitoring or delivery dates?

When deciding where to go inpatient (if you have a choice) try to talk to a Perinatologist at each hospital as well as tour the NICU.  You may spend up to 10 weeks in the hospital but your babies will most likely be there for about a month or so (give or take a few weeks depending on when they arrive).