Twin to Twin Transfusion: The Diagnosis
I was alone when I first learned there was something terribly wrong with my pregnancy.
My husband was with me (well waiting in the waiting room and invited in at the END of the 12-week ultrasound scan) when we received the initial shock that we would be having twins. (Oh boy- the way the ultrasound tech told me we were having twins is pretty awful and will likely be a post on it’s own one day.. I digress). The tech had checked off the “monochorionic” tic box for twins on the summary sheet we received from the scan that day. A quick google search from my phone in the parking lot found that “monochorionic” (as opposed to “dichorionic”) meant the babies were sharing a placenta instead of each having their own, something that only happens for identical twins. A quick google search also told me that it is also possible that two placentas can sometimes fuse to look like one and ultrasound techs can make this mistake early on in the pregnancy. So, to try to put my mind at ease- I just told myself to take this information with a grain of salt and wait until my first visit with my OB-GYN to confirm or discuss this finding further. It was pretty evident from said Google search that one placenta= more potential problems. I some how managed to convince myself not to google anything further, which was no small feat in itself, and remained in blissful ignorance for a couple weeks. My family doctor (a new grad filling in for my doc on mat leave) also did not seem to grasp what this meant and I waited for my OB referral to go through. I began to patiently wait util the 20 week anatomy scan to find out more.
So, the shock began to wear off and I got used to the idea of two more little babes and I went to a course in Boston around 15 weeks of the pregnancy. The little fetuses floated around my tummy walking through historic Boston, they enjoyed a delicious hot buttered lobster roll, attended a ‘Soul Cycle’ class, learned a lot about ‘Social Thinking’ at the conference, and I bought them super cute ‘Cheers’ onesies.
I received a call while getting a pedicure with my colleague on the last day of our trip, -the OB would like me to schedule a 16 week ultrasound before meeting with him for the first time. A 16 week scan? I had never heard of that before, and apparently neither had any of the local clinics when I called them to try to schedule it. I finally called the OB’s office again to confirm what exactly I was looking for, and found out it was a special scan specifically for twin pregnancies and I could book this at the hospital. A special scan just for twins? Jeeze, I thought, these babies are more work already. Hubby had taken time off work to come to the 12 week scan, and he would definitely be at the 20 week anatomy scan to find out the sex of these little peanuts (we loved the surprise of not knowing the sex of our first baby, but decided we had been surprised enough with twins this time around). I assumed this whole 16 week scan was just a routine procedure, no need to halt his busy schedule at work when he could join me next time. Alas, off I went to the hospital for my ultrasound, talking to two other twin-expecting mommies in the waiting room. A student completed the scan with her supervisor joining her at the end and I saw the two little heart beats again, two precious heads and bums, and four sets of hands and feet waving around. The supervising tech told me to wait in the waiting room for the radiologist to review results before I go home. I had my first OB visit scheduled a few hours later that day. At first I was concerned that the radiologist had to review my results, however the same mommies were also back in the waiting room upon my return. One was a veteran twin mom, now expecting a singleton, who reassured me it was standard procedure to wait for the radiologist to review before leaving- and she knew from experience having carried fraternal twins to 40 weeks! So anxiety left my body temporarily, only to slowly creep back up as I waited for over an hour for someone to let me know what was going on. Finally, the secretary came to the waiting room. “Your OB would like you to go straight to his office to review results”. My stomach sank, I felt like I might throw up, that couldn’t be good. Luckily, the OB’s office was literally a two minute drive from the hospital. I called my mother-in-law who was watching the toddler, to let her know I’d be longer than expected. I didn’t yet call my husband, as I was REALLY hoping this was still all just standard procedure- no need to get him worried before I knew what this all meant for sure. Not sure my brain was really working/thinking straight.
I sat down in the waiting room, surrounded by a bajillion super pregnant women (I loved my OB, but he is notoriously at least an hour and a half behind at all times and the waiting room is always super full) and just tried not to cry. I was barely keeping it together, not knowing how what I was waiting to hear would change the course of my pregnancy or my life.
After about ten minutes, or what seemed like an eternity, I finally got to see the doc. He was my OB for my first baby and I really liked him and his bedside manner. He was incredible through her induction and eventual c-section. Even though I was alone, I was thankful it was him delivering the news. The next few minutes are kind of blurry. I remember the nurse only seemed to know it was my first visit in there for this pregnancy, congratulating me as she lead me to the room to wait for my results. She left a ‘new mommy’ welcome/care package on the counter, with goodies and information for the babies to be. I stared at this package as my doctor gave me the grave information. “…fluid difference between the babies…” “…growth discrepancy….” “…could indicate twin to twin transfusion syndrome…” “…beyond my scope…” “at this point do not know if this means one baby will pass.. or both…” “… I am referring you to the best of the best…” and finally pointing to the new mommy package… “let’s just put this way because that’s not going to make you feel any better right now…” – he was right.
I remember snippets of his talk. They play back in my memory like a bad dream. I remember what it felt like to stifle sobs and wipe away tears, fighting to hold on to make it to my car where I could lose it in the privacy of my vehicle. I finally called my husband with all my fears and anxieties confirmed, and raced home. I probably wasn’t safe to drive but I made it, in desperate need of holding the child I already had close to my chest, and taking in her smells and smiles. The next day felt like an eternity. Surely, I thought the referring hospital (Mount Sinai) would call me right away given the situation but I didn’t take any chances and called as soon as I thought someone might answer in the morning. I didn’t even really know which department to call, but I found my way to a helpful nurse who promised to call me back later that day. It was Wednesday, she called me back and told me the specialists would see me Friday. FRIDAY?!?!!?!? I had to wait THREE days after receiving that news? How would I function? What does this mean?
Somehow, we made it through, taking long walks each day to talk and to try to elevate our moods- exercise is the best medicine as they say. We took the GO Train and subway in silence that Friday morning, and awaited our appointment in the downtown Toronto clinic. A calm, caring and gentle resident doctor from Norway retrieved us from the waiting room and performed the diagnostic ultrasound. We were immediately impressed by the technology and precision of their instruments. The quality of the images and detail to which we could see our babies was incredible. Little did we know this would be just the beginning of about a million ultrasounds in this clinic that would see us through to the end of this pregnancy.
The doctor was so patient and her demeanour so soft and attuned to our situation, she really helped us to feel as at ease as possible. She asked us what we knew about our situation, and about Twin to Twin Transfusion Syndrome (TTTS) and explained that we would be looking to confirm that diagnosis today. As it turns out, there are varying degrees of knowledge and awareness of TTTS out in the community as sometimes it is misdiagnosed or missed completely. Turns out that elusive “16 week scan” is designed to look for this exact problem. Had the OB not flagged me to get that scan, my family doctor would not have known about it and it would not have been discovered until 20 weeks. By then, it may have already been too late. This syndrome can advance very quickly, and early detection is essential for intervention and successful outcomes. Awareness is critical for pregnancies of multiples.
The staff physician came in to review results and confirm the diagnosis, Twin to Twin Transfusion Syndrome, Stage 3 with abnormal blood flow in baby B’s umbilical cord. As you can see below, only one stage away from complete heart failure in one of the babies.
What does this mean? How sick are our babies? What are our options? This was just the beginning of our journey….
The Stages of TTTS (https://www.ssmhealth.com/cardinal-glennon/fetal-care-institute/twin-abnormalities/twin-twin-transfusion-syndrome)
There are five stages of TTTS.
Stage 1: There is an imbalance of amniotic fluid, with a small amount (<2cm) around the donor twin and a large amount around the recipient twin (>8cm). The twins are often more than 20% different in size.
Stage 2: The bladder of the donor twin is not visible or it does not fill with urine during an ultrasound exam.
Stage 3: The imbalance of blood flow starts to affect the heart function in one or both babies. This is seen in abnormal blood flow in the umbilical cords or hearts of the twins.
Stage 4: The imbalance of blood flow causes signs of heart failure in one of the twins.
Stage 5: One or both of the twins has passed away from severe TTTS.