I had an appointment yesterday and my mono/di boys are still doing ok, still growing but small, especially Baby B who has dropped below the 10th percentile again. They aren't too worried because I'm at week 32 with no PTL symptoms, both babies continue to grow, we've passed all of the NSTs so far, and fluid levels are fine but my OB ordered an additional test next week. She wants to have a doppler done on the babies' brains to see if TAPS (twin anemia polycythemia sequence)is a possibility. She said it occurs in about 5% of mono/di twins and might help to explain size discordance since they didn't develop TTTS and fluid levels have always been fine. She said it was similar to TTTS but basically it sounds like one baby would be born anemic and the other polycythemic (increased blood volume). At this point they wouldn't try to treat them in utero but would induce me early and then treat them with blood transfusions at birth. Has anyone else had experience with this? I did a search here but "TAPS" wasn't really returning any results about this. I've looked online but finding only dense academic research papers and nothing from people who had their babies treated or who tested positive for this. Hopefully our little guys are fine but I wanted to read up a little to be prepared for the test next week and asking more questions.
I don't have any experience with this but just wanted to give you lots of :hug:! Keep us updated on how everything goes.
I think my mono-di boys had this, although it was never referred to as TAPS and they were not diagnosed until birth. I'm in the mood to type a novel about it, so here I go ... My OB initially thought our twins were mo-mo - he specializes in high-risk pregnancies and performed frequent ultrasounds (8, 12, 15, 18, 20, 22, 24, 26, 28, 30, 31, 32, 33, 34, 35, 36, 37, 38 weeks). I did go see a peri at around 22 weeks - he found the membrane; the peri did think we had a possibility of TTTS because fluids were a little off, but not enough difference to be classified as TTTS. He released me back to my OB. As I said, he specializes in high risk, lots of ultrasounds, etc., so I was fine with that. The babies measured within a day of each other - or an ounce or two of each other - the entire pregnancy except for around week 36 I think? A measured 5 lbs. and change and B measured well over 6 lbs. The nurse did the initial u/s, my OB did a second to confirm her measurements. There was no big concern - just thought they had a bad angle. The next week the boys were very close together in size again. My final u/s at 38 weeks estimated A at 6 lbs. 10 oz. and B at 6 lbs. 12 oz. The babies did not have a notable fluid difference at any point. I had a scheduled c-section at 38+5. When they pulled A out, a nurse commented on what a little guy he was - he weighed in at 5 lbs. even and was 19 inches long. B followed a few seconds later and weighed 6 lbs. 11 oz. and was 18 inches long. Baby A was very anemic and B was very pink from the extra blood. I have included a link to a fb pic of what they looked like: http://www.facebook.com/photo.php?pid=30628915&l=60cf61fbf3&id=1103118773 We discussed the anemia problem with the pedis at the hospital, etc. They continued to test A for his blood sugars, which were always in the normal range. The problem he did have, however, was that he couldn't maintain his body temp. At some point each day, he would drop low enough that they'd take him back to the nursery to the warmers (not the NICU). The day before we were to be discharged, they ended up moving him to the NICU to be in an isolette - something about a policy that if a baby couldn't maintain body temp that many days in a row, they admitted them to the NICU. The policy stated that they would be in an isolette for 24 hours, then had to maintain their body temp in the outside world for 48 hours before they could be released. I was soooooo bummed. Our second child had a lengthy - and unexpected - NICU stay. Having A sent to the NICU sent me over the edge. I had done everything I was supposed to - I carried those babies to 38+5 in the hotter than you-know-what south Texas summer, for crying out loud! BUT, he did follow instructions and made it out of the NICU in the shortest allotted time (24 in the isolette, 48 out). Nobody ever mentioned the possibility of a blood transfusion. The only other treatment he had was iron drops in his bottles - we did that for 4 months, maybe? Not too long, anyway. Baby A gained weight at a faster rate than B, steadily catching up. By their nine month check up, they weighed exactly the same - 18 lbs. 9 oz. Baby A was still an inch longer, though. That's been sort of interesting to us - that he was longer, but WAY skinnier. I wonder if he had been heavier before birth and lost weight? I've never asked anyone who would have an educated answer. Baby A's features are finer than B's, which is sort of interesting, too - slightly smaller nose, ears, feet. I doubt that's a result of the TAPS, or whatever we had going on, though. Oh - and we also thought it was funny that there was such a weigh discrepancy at birth after all those zillions of u/s ... although we wondered if based on two of the three measurements - head circ. and femur - that he did measure on track. It seemed like abdominal circumference was much more subjective since there wasn't a bone to measure. What else ... I think that's all. Please let me know if you have any questions about our experience - I'd be happy to help!
My boys were never diagnosed with this, however my peri tested every set of mono/di twins for it routinely. The last few ultrasounds before delivery they did doplars on their brains to check for anemia.
I am sorry I have no knowledge of this but am very grateful for all of you sharing stories so we can all be educated! By the way, speaking of getting more educated, what are mono/di twins?
Thank you, everyone. I appreciate you sharing your story amymc72. It has been difficult finding info on this except for a few recently published medical research papers. It seems like the condition was only identified a few years ago. I'll keep you all posted on the results of the test which is scheduled on Tuesday.
Below is a link to an article for those interested. Since the reasearch seems fairly new, maybe more mo/di twin moms will be looking for info in the future. It's hard to find much about it. http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowPDF&ArtikelNr=304512&Ausgabe=254394&ProduktNr=224239&filename=304512.pdf
