TTTS Laser Surgery: Happy 3rd Anniversary to Us
Updated: Nov 2, 2020
Halloween is a weird time for me. A nagging sense of dread and overwhelm starts creeping up on me a week or two before. It usually takes me a while to figure out what is going on. I can't quite put my finger on why I feel so "off", then it will all dawn on me at once- we are hitting "anniversary" time.
The body keeps the score as they say in the trauma world, and sometimes your body and brain start remembering events that you haven't brought your conscious awareness back to quite yet. But as the weather cools and the colours change- there is a part of me that responds before I am quite ready to.
Three years ago today we received a surgery to try to save our twin girls. We didn't know if it would be enough. We didn't know and the doctors couldn't predict the outcome, would we lose one twin? Both?
Three years ago on Halloween we suited up our 19 month old in an Elmo costume, grabbed the last sad, tiny pumpkin from the grocery store and carved it, and tried to trick or treat as if we didn't have to wake up before the sun the next day for surgery. We waited on an emergency list all day November 1, 18 weeks pregnancy with twins and not allowed any solids or liquids- IV only. Too many nurses called in sick that day, the babies were stable, we would have to wait until November 2.
Three years ago today.
Reposting our story for those who want to know more about our journey, but most importantly to reach others going through the same journey- the stories of others helped me immensely at this time, comfort in knowing you aren't alone. If you are experiencing TTTS please don't hesitate to be in touch or ask me questions.
If you aren't familiar with Twin to Twin Transfusion Syndrome (TTTS), this is from the Cincinnati Children’s Hospital Website:
“Twin-twin transfusion syndrome (TTTS) is a rare, serious condition that can occur in pregnancies when identical twins share a placenta. Abnormal blood vessel connections form in the placenta and allow blood to flow unevenly between the babies. One twin − called the donor – becomes dehydrated; and the other − called the recipient − develops high blood pressure and produces too much urine and over fills the amniotic sac.
TTTS is a disease of the placenta, not the babies themselves, and affects each twin differently. The donor twin, who is becoming dehydrated, does not produce as much urine as it should, resulting in a low amount of amniotic fluid and poor fetal growth. The recipient twin, whose system is overwhelmed by too much fluid, produces more urine than usual. This eventually leads to an enlarged bladder and excess amniotic fluid. The excess fluid can put a strain on the recipient twin’s heart, sometimes leading to heart failure.”
I had only heard of this syndrome in passing, heard rumblings of it in my experience as paediatric therapist, but had no real idea what it meant and definitely no idea what it meant for my pregnancy. What we were told on that first day was simple, if we do nothing, both of our babies will die. As you can see in the definition of TTTS above, the situation is rough on both babies. At first thought, it seems like only the donor baby is suffering, but the syndrome is very straining on the recipient twin as well. What we also learned was that if the donor twin passes away and the shared vessels between the babies have not been severed, the recipient twin passes away shortly afterward. When there is a fetal twin death and shared blood vessels, there is a big excess of blood flow from the deceased twin that overwhelms the recipient baby causing a fatal heart attack or stroke. All very terrifying right??
So, doing nothing wasn’t an option. But what were our choices? The doctors also explained that not only was there this blood flow issue, but the babies weren’t sharing the placenta equally either. This is called selective intrauterine growth restriction or sIUGR. They weren’t sure if the donor’s share of the placenta was large enough to nourish her to a gestational age and weight that was viable. The doctors explained this as a bit of a double edged sword, the placenta share issue was actually a good thing for our recipient, Baby A (Evelyn). Even though our donor, Baby B (Olivia), was funnelling her blood over to Evelyn through these shared connections, since her portion of the placenta was so small, the amount of extra blood she was sending over to Evelyn was not enough to overwhelm her system. Up until this point, Evelyn was not showing any signs of distress and was tolerating the TTTS quite well. Other than having a giant swimming pool of amniotic fluid from being a little over hydrated, her bladder and heart were coping beautifully. She didn’t have any idea how much her little sissy was suffering next door.
The doctors walked us through a big powerpoint presentation handout about the condition, statistics and treatment options. Turns out, there is a 3 to 5 in 1000 chance that you will have identical twins. *warning- tangent* do you know how many times in a day I get asked if twins run in my family? TOO MANY! But anyway- if anyone is wondering the same thing, yes they do run in my family, BUT identical twins DO NOT get passed on genetically. Fraternal twins run in families, identical do not. Just wanted to clarify that one since it seems to be so popular. *tangent over* So of these 3 to 5 in 1000 identical twins out there in the population- about 15% of them go on to develop TTTS and 15-20% will develop IUGR- and I spent WAYYY too much time googling just now trying to find how many lucky people like us end up with both TTTS and sIUGR and couldn’t find the specific statistic-BUT the whole point was that we really felt like we won the crappy odds lottery. SERIOUSLY- all. of. the. things. went. wrong. And it felt like maybe that was just the trend being set for us, we weren’t overly optimistic about our future.
They told us about a laser ablation surgery that could block the shared connections in the placenta, to prevent TTTS from continuing. Although, nothing could be done about how the placenta was shared between the babies, at least I was a “good candidate” for surgery. My placenta was posterior (along the back of my placenta), and most easily accessible by laser. The surgery was not without it’s own risks and statistics. Despite the laser treatment, the chance that one of our babies would pass was 15%. In about 20% of cases, both twins will still be delivered very early and may not survive. The best estimate they could give us was that people tend to deliver 10 weeks after laser surgery on average. The thought of delivering two small babies at 28 weeks was so scary. We were also told that on average in 50-60% of TTTS cases, both twins survive and about 80-90% of these pregnancies will have one surviving twin. In some cases, when the placenta share is extremely uneven and the blood flow is very restricted to one baby, a selective reduction is recommended at the time of laser surgery as the chances for a positive outcome for a ‘surviving twin’ is increased the earlier the other baby passes away. We had some big decisions ahead of us, and some decisions we really hoped we did not have to make. We trusted our doctor beyond measure, and waited for our final ultrasound on the morning of our surgery hoping that our path forward would be made clear.
We were told to arrive first thing, Wednesday, November 1, 2017 at 6am to get on the hospital’s ’emergency surgery list’ for that day. I can remember vividly, putting on a happy face, slapping on an Elmo costume onto my toddler, and waddling around our court and neighbouring street the night before. Thinking back, this was probably my biggest exercise in mindfulness and being “in the moment” to date, I truly did enjoy that Halloween and one last “normal” night as a family of three. Emma was about 19 months old, and just getting the hang of joyfully proclaiming “tick a teeee” at each door- I let go of the worries that lay ahead. They would still be waiting for me in the morning.
This was pretty much the only pumpkin left at the store on Halloween. Emma still didn’t seem to care it was so small!
Getting ready to go out!
This precious face still needed us to show up, c’mon- cutest Elmo ever.
Putting on a smile, who knows what tomorrow holds! Way to go daddy, blurry photo.
The alarm went off early at 5am and my dad drove Sean and I to the hospital, the tone was somber but at least the drive was quick without traffic at that time.
We sat with heavy hearts and long faces to register ourselves at the hospital that morning. However, it was during registration that I felt like we had our first “sign” that everything would be alright. As we gave my health card over to the clerk and filled out the paperwork, he stopped and said, “I can tell you are both very nervous and seem upset, but what I can tell you is that your doctor is incredible at what he does. I know from experience. My twin daughters are now 14 years old and wouldn’t be here without him. We had the same surgery over 14 years ago and now both my daughters are happy and healthy” (or at least something to that degree, I was pretty emotional and didn’t write it down right away). BUT C’MON- how crazy is that!?!?! The guy registering us also had this super rare condition? and had surgery with our doctor?! If that isn’t a sign, I don’t know what is.
Next, we were off to my hospital room to wait. The nurse asked me if I needed things to shower, I was confused, I just came from home and it was 6am. Why would I need to shower? Her answer made me truly grateful to live so close to such an amazing team of specialists, “most people who come to us for this procedure have flown in from somewhere else in Canada and want to freshen up after travelling”. I was also reminded of how complicated our situation was, and how only a handful of people in the whole country were equipped to help us.
Long story short, the surgery didn’t end up happening this day. Hmph. I, however, still fasted alllllllllll day in anticipation. 17 weeks and 6 days pregnant. With twins. No food. No fluid (well I guess I was allowed to suck ice). All. Damn. Day. 5am- 10pm when they finally said, “k guys, not happening today- but definitely tomorrow”. They had too many surgical nurses call in sick, and since we had seemed pretty stable that morning, we were shifted to the next day. We were welcome to stay the night in the hospital, but opted for a night at home and arrived back early the next day (but not before I crushed a chicken dinner in the hospital food court at 10pm) and the in-laws drove us back home.
So, November 2, 2017- we repeated our 5:30am drive downtown with my dad and knew that TODAY was the day. We snuck back into our hospital room and took a little nap (you had to technically be there by 6am to get on the emergency list each day) until my delicious (NOT) hospital breakfast arrived around 9am and we waited for our final ultrasound before surgery.
I lay on the table, feeling the cool jelly of the ultrasound on my tummy, awaiting the fluttering hearts and waving limbs we’d been frequently seeing the last couple weeks, anxious in anticipation of what today’s blood flow measurements would tell us. I remember the exact words of the specialist, “Well, I wouldn’t count this little one out quite yet”. But, he would also go on to later add, that he felt based on his best estimate or statistic, she would have a 30% chance of survival. That was enough for us to give that little warrior a fighting chance. Little did I know that the next 14 weeks, we would experience a series of highs, lows, and constant “unknowns”. We did not know if we would become a family of 4 or 5 right up until the day I delivered.
Anyway, this post is supposed to be about the surgery… right! We went into surgery around 11am or maybe 1pm? I dunno, that part is blurry, too. An amazing resident from Denmark held my hand tightly as they wheeled me in and Sean was scrubbing up. I was fully awake for the procedure if you can believe it. Apparently sometimes you are told to hold your breath or something to get your lungs out of the way of the laser, so they keep you conscious. I did not have to do that. We also had the option of watching the surgery on a big screen TV or not, and we obviously opted to do so. Those moments of watching those little fingers, toes, and faces go by are literally etched into my memory forever. It also helps that they were able to snap a couple pics to take home.
What did the surgery entail? They essentially punctured my uterus through a tiny hole to the left of my belly button, sent in a camera and a laser, and burned those shared blood vessels closed. They also just burned a wall across where they felt the placenta was divided in it’s share between the twins just to be sure they didn’t miss any connections (to fully protect Baby A in the event that Baby B did pass). All while I was on a local anesthetic and pain drug IV only. You will only feel a bit of “pressure” they said, but let me tell you, when a doctor is reefing a laser in all directions in your placenta to cauterize it from end to end, “pressure” HURTS. I def leaned over to the anesthesiologist a few times to ask to up the d.r.u.g.s.
That little red dot is all that is left as evidence of the life saving surgery I had for my girls. CRAZY, EH?
Poor Olivia was literally “shrink wrapped” in her amniotic sac membranes and we could see her “stuck” with her hands up close to her face. Evelyn was free floating around and they actually had push her out of the way with the laser at one point to gain access to vessels in the placenta. Crazy huh? They also took out about 1500ml of extra fluid that Evelyn was floating around in while they were in there. Leaving the excess fluid stresses the membrane and cervix, making the body think it needs to go into labour. So, thank goodness they took that out! I left surgery looking a couple months less pregnant. They asked if we wanted an amniocentesis done since they were taking it out anyway, we said sure, we were over surprises at that point and figured the more information the better.
Sweet glasses on to protect my eyes from the laser beams. Belly prepped, thumbs up- let’s do this!
dad selfie in the OR
post-procedure chills, uncontrollable shivers (shock?) and warm blankets
pictures of pictures, sorry for the poor quality! Don’t take my picture!
I stayed only one night following the procedure and held my breath during the first ultrasound the morning after. Two healthy heart beats. Phew. Fluid levels were normal around Evelyn now since they drained her sac, but it would take a few weeks for Olivia to “pee” enough to restore healthier amniotic fluid levels. As I think I revealed in earlier post, amniotic fluid= baby pee. I did not know that before.
The biggest risk after surgery is membrane rupture (i.e. your water breaking), since they did just put a hole in it to get the laser in there. I was on high alert for leaks at all times. Terrifying. The first two weeks have the highest risk, decreasing exponentially after that. I was on modified bed rest for a few weeks after surgery, and boy, my toddler was not impressed I could not pick her up. I would point to the “boo boo” bandaid on my tummy every time she flashed her big peepers at me, crying to be picked up. Eventually she got it, but it broke my heart at first. This whole journey definitely took it’s toll on her tiny little soul.
She did, however, find her way into my bathroom one day to get her own “band aid” for a “boo boo on belly”… omg I almost died.. Emma apparently also had laser surgery for TTTS, bless her..
We began our every other week ultrasound routine from that point out, right up until delivery… waiting… always waiting… and wondering if we would meet this child who was always below the 1st percentile for growth and had irregular blood flow from the placenta at all times. No one could give us definitive answers, and we had to lean into the unknown for weeks and weeks at a time.
You truly never know what you can cope with, until you meet it up close and personal (and you have no choice)