The girls have names and I have switched doctors (back to doc I saw the majority of the pregnancy). I’m really not trying to be dramatic but there are major, life threatening complications that can arise with this type of twin pregnancy. They share a placenta and have a high probability that they also share some blood vessel connections. Because of this they must be watched closely. I have done my research and know that from 16 weeks on the babies were supposed to be under the lead care of a perinatologist, with ultrasounds every 2 weeks (growth scans every 4 weeks and dopplers, fluid pockets, arterial pressure measurements every 2 weeks) until 28 weeks. From 28 weeks on the ultrasounds continue every 2 weeks unless they find something wrong, that would be more frequent but I also add weekly non-stress tests and weekly OB visits as well as urinalysis – and this is all if everything is going 100% okay.
Well, first – everything is not 100% okay with the girls. I’ll get into that a bit later. But 2nd – I knew all of these monitoring points were not being met – and that is why I attempted to switch to the only other OB in the area to see if he would monitor like I was supposed to be. Cue all the insanity and confusion.
I started out my pregnancy seeing Dr. D – at OB office #1. His midwife said there was no need for me to see an OB because “twins are just two pregnancies.. at the same time” – negative honey. Cue switch to 2nd OB office.
Go to OB #2 – Dr. O: He was amazing. Told me everything I want to hear – babies will be delivered no later than 36 weeks and 6 days, monitoring, shared care with the perinatologist in Syracuse, steroids for their lungs before birth, blah blah. Problem with this office is that they have 3 OBs adn 2 midwives and I was being shuffled between each one. My plan of care with Dr. O was out the window when I would show up for an appointment with a Midwife or Dr. C (who delivered my daughter and I don’t care for). So, I remained with this doc because there are no other offices but banked on the fact that my care would be managed by the high risk specialist. Well, I was wrong.
My first referral to the perinatologist at 12 weeks was actually only put in for “genetic consult” where they do the blood and ultrasound testing to predict any genetic issues with the twins. When I met with the genetic counselor I asked, “so when do I see the perinatologist” and she responded “oh, your referral was only for genetic counseling, not to see an actual doctor.”
I go back to my OB but had been scheduled with midwives and it wasnt until 17 weeks that I saw my OB and mentioned the mistake. He quickly wrote a referral to the specialist for my anatomy scan to be done at 20 weeks.
I went in to this 20 week anatomy scan and then into the office with the doctor. First flag should hav been that I was sitting in this man’s office – desk, meeting chairs, etc – not an exam room. Dr. S was about 85-90 years old and spent an hour reviewing all the perfectly healthy anatomy and growth of the twins. He announced that he didn’t need to see me back to which I raised concern because a perinatologist/MFM should be leading all care for monochorionic (shared placenta) twins. He reluctantly scheduled me for an appointment with him at 27 weeks (we now know why he was so reluctant/confused… more on that below).
So I go back to my OB at home at 22 weeks and meet with Dr C (who delivered my daughter) and when I demanded more referrals to the MFM in Syracuse he read the MFMs notes that said I didn’t need to be seen more. I felt like I was in a stalemate – who in the world is going to advocate for these babies and their lack of monitoring/care if not me? But no one would listen to the fact that I KNEW they weren’t being checked on enough. They had never received a fetal echocardiogram (supposed to be done between 18-22 weeks), they have never received fetal dopplers on their umbilical cords or arteries in their brain, they weren’t getting regular growth scans or deep fluid pocket measurements. I was praising God that they were healthy every time we got to hear their heartbeats but I also knew that issues that these types of twins have (Twin to Twin Transfusion Syndrome, TAPS, TRAP, sIUGR, etc) could go from nothing to deadly in a matter of days. This is why high level monitoring is done to be able to predict if an issues is arising. And my babies weren’t being given that *insurance policy* of the frequent monitoring.
Pissed off and fed up – OB #2 and the Specialist weren’t following American College of Gynecology and Society of Maternal Fetal Medicine standards… maybe OB #1 would.
I call to request a consult, to which they refused to do unless I completely transferred care. So I took a leap of faith and did. I had to beg for this because apparently OB#1 has a strict “if you leave our practice, we will not let you come back” policy.
I saw OB#1 (first time actually seeing him as first office visit I had with the twins was with the midwife that said seeing an OB was unnecessary). Dr. D told me everything I wanted to hear but then said that “insurance wont cover higher monitoring and the MFM doesn’t see it necessary for you to be monitored”. So my next option was my 27 week appointment when I go to the MFM and ask him why the hell he won’t follow standard practice recommendations by the organization that accredits his medical license.
At this 27 week appointment I got an ultrasound and found out that the babies were 23% discordant (their weights differed by 23%). In all my obsessive MoDi twin medical journal reading, I knew that anything over 18% was cause for concern. We then met with Dr S., the same guy I saw at 20 weeks. He came in all smiles saying “if these were my twins I would be happy” and tried to shake our hands and leave. I threw a fit – “NO, I am supposed to be monitored more by you! These babies are discordant!! That indicates they share some blood flow and we could have complications starting to show up!!”. He tried to tell me that unless one baby was below the 10th percentile for weight compared to a singleton baby, then it wasn’t to be worried about. I’m crying, my husband is furious. And we’re sent packing.
I met with my OB (#1 – Dr. D if you’re following) and he not only told me that he refused to monitor these babies at all (refused anymore ultrasounds, refused anything but non-stress tests, refused to write a referral for me to see another specialist in that office) but then the kicker… he refused to deliver me before 39 weeks. EVERYTHING I have read has said that 37 weeks is the absolute maximum for babies sharing a placenta because the risk of still birth goes up exponentially after 37 weeks. The placenta just gets tired and quits working. For this reason common practice is that the babies are safer out of the womb and in the NICU being monitored than they are staying inside the womb past 37 weeks. That was the final straw for me. I went home and started calling every reputable obstetric program I could find.
I talked with the perinatology office at Johns Hopkins in Maryland. At 2 university hospitals in New York (Buffalo and Albany) who all told me that I was right in being alarmed at the lack of monitoring and to advocate like crazy for these babies.
So I called the specialist in Syracuse demanding they tell me which doctor at their practice specializes in high risk TWIN pregnancies. And then it all became clear…
The receptionist pulled up my chart and says, “Ma’am, I hate to tell you this but you have never been seen by a perinatologist here – your referral was only for fetal growth so you saw our MD who specializes in clinical studies of fetal growth…”
Oh… my… gosh…
She goes on to tell me that they only have 2 actual perinatologists in their office. What SHOULD have happened is that I would have seen the perinatologist between 16-18 weeks. He would meet with me, establish my plan of care, how and where I wanted to deliver, and set all the parameters for my monitoring and care and send those back to my OB for him to follow. I would then still be seen at the high risk office once a month with a midwife or nurse practitioner and also for high resolution ultrasound to monitor the babies unless anything went wrong. At 34 weeks I would be released from the high risk office’s care for delivery at 36 weeks with my OB at home.
So this was all due to botched referrals.
And the reason why the MD I saw was so reluctant to make me more appointments or give me any time at all was because – my babies don’t have any anatomical abnormalities OR growth disorders. Which is the only reason he is ever consulted for a baby. So here he is thinking I’m this crazy pregnant woman who doesn’t need monitoring but is demanding monitoring.
I called OB #2 (Dr. O – if you’re following) and sobbed to the receptionist. “Please take me back, please!! I need a doctor who will deliver in the 36th week!”. I explained everything and they took me back, PRAISE GOD.
I just had my first appointment back with Dr. O – and I was fully prepared to apologize up and down for being crazy and switching and blah blah but also to let him know that I found out the issues.
To my surprise, Dr O came in the exam room and apologized to me for the botched referral and all of the confusion. He let me know that he wrote a standing reoccuring referral for fetal growth scans to be done every 2 weeks at the hospital down the street from my house, he will be doing in-office ultrasounds to measure fluid pockets every week, I will get the NST every week. He will give babies steroids 1 week before delivery on March 6th if we make it that far. AND … bum bum bummmmm… he is rewriting the referral for the ACTUAL PERINATOLOGIST IN SYRACUSE!!!
So, moral of the story is that I’m not crazy (although I Was starting to go insane with all of my research, calling, nagging, etc), I was actually right to be advocating so hard for these babies.
My ultrasound for growth should have been today (2 weeks since my last ultrasound) but they didn’t have any appointments available until next Wednesday. Hopefully we will see the babies are staying the same in terms of discordance or getting closer together in weights.
I really appreciate all the love and prayers everyone is showing us. Now life is about to get crazy with at least 1-2 appointments each week until the girls come. They can realistically come at any moment from here on out. I’m slowly doing all the things – because for some reason I was mentally/emotionally putting them off. So I have read Babywise, put the crib in our room, washed all the premie and NB sized clothes, washed the cloth diapers, and made a list of crap I need to pack in the hospital bag. We’re in the home stretch. My body feels the stretch for SURE… praying we just make it until at least February 3rd – which is 32 weeks!