I went in for a routine anatomy scan Friday afternoon and almost immediately I knew something was wrong when the normally chatty med student was laser focused on the screen in front of her and then abruptly left the room only to return with another student to re-scan me. I was a patient of a learning hospital so it wasn’t unusual for the students to perform the scans but it was unusual that the scan lasted nearly two hours. After the second student couldn’t find whatever it was they were looking for, they brought in the OB.
After looking at the screen no less than 30 seconds, the OB on duty turned towards me and said “the twins have TTTS”. It was all very matter of fact. I had heard the term early on when they first identified that I was carrying identicals but I honestly had no clue what it meant because I know better than to go down the Google rabbit hole.
After cleaning me up, they hurried me out of the room and showed me into the OB’s private office where she was on the phone with a specialist at UCLA. After hanging up she informed me that she had arranged an appoint for me that coming Monday to be seen by one of two specialists in CA that would evaluate me and my condition for a laser ablation procedure that was needed if the babies were going to survive.
I spoke briefly with the staff at UCLA who would be evaluating and performing the procedure if I was deemed a canidate. They were empathetic and thoroughly explained everything.
Twin-Twin transfusion syndrome is a rare disorder that sometimes occur in women that are carrying identical twins and the twins share a placenta. Abnormal blood vessels form in the placenta causing uneven blood flow and nutrients being delivered to each baby. One baby is “stealing” blood and nutrients from the other causing one to continue to grow while the other one stops. Additional complications include excessive amniotic fluid around the larger baby with decreased amniotic fluid around what they call the donor twin. I had this as well. They would perform a procedure on my placenta using a laser to severe certain blood vessels in the placenta in hopes of re-distributing blood flow and nutrients to both babies. I was told that the success rate of this procedure was at an 85% chance that least one baby would survive. It was then that the news sunk in – this was serious and time was literally of the essence.
I was instructed to go home and be on complete bed rest until Monday morning. I was only allowed to get up to go to the bathroom. I called Sikmon immediately and told him as much as I could through all the tears. I don’t even remember how I made the 45 minute drive home in rush hour traffic but I did. When I got home, I went straight to bed and we laid there together and looked up articles about the laser ablation procedure, watched videos, and read forums of other TTTS survivors.
I snapped this picture of myself while in bed Saturday afternoon only getting up to go to the bathroom and eat Taco Bell. Just hoping and praying for Monday.
On Saturday evening I got up once more to use the restroom and it felt like I was leaking some fluid. I thought it was just pee but I called the 24hr on call nurse at UCLA just to be sure. She instructed us to go into the ER and get checked out just in case so we made the 30 min drive there late Saturday night.
3 years ago, I sat in the ER when the OB on call confirmed my worst fears: my membranes had ruptured and at 21 weeks and 5 days pregnant, the babies would likely not survive. Immediate tears and hysterics right there in the ER with only a thin curtain of privacy to mourn our loss and separate us from the rest of the room.
We were immediately checked in, given a private room in the hospital where we would eventually leave empty belly and empty handed. The thought alone broke me. We were given many choices of how we could proceed through the next few hours/days but none of them were choices I wanted to or was ready to make.
Disclaimer: In an effort to open up and be vulnerable, I’m sharing explicit details and photos from our experience that I’ve never shared before. Please keep in mind that each situation is unique, everyone processes things differently, so I hope you can keep that in mind and not judge what we did or didn’t do as you read the next part. While going through this we felt like we were the only ones who had ever lost a child and I spent many months blaming myself, my body, and apologizing to everyone for failing. I’ve only realized just recently that the reason I felt so alone is because not many people openly talk about pregnancy and infant loss. My hope is to share my story so that someone somewhere going through this knows that they aren’t alone in this.
The hospital staff gave us 3 options. They told us that we could go home and wait for contractions to start on their own and then come back in to deliver, they could start me on Pitocin to jumpstart the labor process, or I could go under anesthesia and they could remove the babies with a vacuum – basically a D&C. They explained that if I chose the last option, I would be put to sleep and wake up not pregnant anymore but that the babies would not come out intact so if I wanted a chance to hold them and say goodbye, that wouldn’t be possible.
We listened through our options, asked a few questions, but when we woke up Sunday morning we still hadn’t decided and didn’t know what to do. Sikmon said it was my choice but the burden of making that choice, weighed heavily on my heart. If the choice wasn’t to save my babies, I just wanted someone to choose for me because how does one choose how to remove babies from your body that you haven’t even named? The whole thing felt unfair.
When faced with hard things, I usually shut down. I crawl into a cave, build a wall, and just sorta live there for a while. Come Sunday, I was in full shutdown mode. I had cried all I could possibly cry, researched the internet for a miracle solution, I told God that if he saved my babies I wouldn’t ever ask for another, and in a moment of desperation, I asked the resident to save just one of them. Faced with the realization that this was going to happen whether I liked it or not, I felt defeated.
By mid-day Sunday, I knew and had mostly accepted that nothing more could be done to save them. This was inevitable. I had to choose. We weren’t going to be leaving the hospital with two babies.
Word got out to family what was going on and they wanted to come and visit and although I didn’t really want the company, I allowed them to come. I instructed my Mom to tell them that they weren’t allowed to bring it up, ask questions, talk to the doctors, cry, or bring flowers. At this point I went into survival mode. With a permanent lump in my throat and fighting back tears every second, my mission from that point forward was to minimize the emotional damage for myself as much as I could and get through the next few hours as quickly and painlessly as I could. I knew that if they came in crying and asking questions, it would open the gaping hole I was trying so hard to avoid and it’d swallow me up. If I had to do what I was about to do, I needed to be strong in order to do it and them crying and fussing over me wouldn’t help.
After they left we rang the nurse on call and made our decision: I wanted to be put under and wake up not pregnant.
Some people may see this choice as cold but I chose what I thought would be best for me emotionally. I didn’t want to see them. I didn’t want to hold them. I didn’t want to get attached. I didn’t want to be in physical pain (labor) because I was already in so much emotional pain. I wanted to literally wake up and have this entire nightmare be over.
The doctor on call said ok but that they only had one anesthesiologist that night and it might be an hour or two before they could get me prepped and ready for surgery. I said ok. Resigned to the fact that this was about to happen and I just wanted to get it over with. While we were waiting contractions started although I had no idea what I was experiencing because I had never gone through labor before. I told Sikmon. He started timing them but I don’t think he was keeping great track because soon enough I’d be wheeled back into the OR to have my procedure anyway.
Two hours passed by, and they told me that they still didn’t have an anesthesiologist and were trying to call around to get someone to come in to do this for them because the other anesthesiologist was stuck in surgery and it was taking longer than they expected. More contractions. They offered morphine to ease the pain. I accepted.
By now it was nearing midnight and they finally came in and said someone was on their way so they were going to wheel me into a labor and delivery room so the anesthesiologist could prep me for surgery. The contractions hurt, the morphine had worn off, and I was getting irritable. I had been waiting almost 6 hours.
I was in the labor and delivery room no more than 30 minutes, no medical staff in sight, when I felt all this pressure down below. My Mom was sitting on the couch eating pizza and I think Sikmon was sleeping when I screamed”SOMETHING’S COMING!!!!!!” and then felt a giant gush of water followed by a little plop. Out came Baby A who was miraculously delivered into the hands of the on call doctor who came rushing in when I screamed. 3 short minutes later another gush of water, although significantly smaller, followed by another small plop with Baby B. Words cant describe the flurry of emotions that flooded over me: anger, relief, immense sadness, and fear. It was finally over.
Because I had chosen to have the procedure, the doctors never checked to see how much I was dialated even despite me informing them that I was experiencing contractions. They too were set in motion for a delivery in the OR, not in the labor and delivery room therefore no medical staff were in the room when I screamed out, the doctor who caught Baby A wasn’t even an OB or dressed for a delivery but she sure did run fast and made it just in time.
I look back now and just sorta laugh that I yelled “something’s coming”. Duh. It was a baby. But in that chaotic moment, I had no clue what was happening to my body, I was expecting an epidural, not a baby. And although this entire process wasn’t anything we planned or wanted, it was everything we needed.
Both babies were born alive and breathing which no one expected. One was redder than the other – another sign that TTTS was in full effect. The nurses hurried the babies off to the side never asking if I wanted to hold them because they probably assumed that I didn’t due to my previous elected choice but after a few minutes I asked if I could and we held them, cried over them, and inspected their tiny features until they passed in our arms.
Taking pictures was so odd. Would we even want these memories? I remember wondering if I was supposed to smile? There’s nothing to smile about yet your brain is wired to smile for pictures.
Despite all the emotional pain we had felt up to this point, I’d say what happens next is even more painful.
- Filing a birth certificate and a death certificate on the same day
- Being asked how you want to deal with the remains
- Choosing names for babies before you even had a chance to weigh the options
- Walking to the parking garage to go home empty handed
Still in survival mode and not wanting to deal with any of this, I didn’t. I couldn’t. I was emotionally unable to do any of these things.
Sikmon filled out the birth and death certificates for both girls.
I didn’t want to make “arrangements” for my daughters but we weren’t allowed to leave the hospital until the coroner had picked up the girls and knowing that I was avoiding having to make these decisions, my Dad stepped in a took care of everything. My only request was that the girls stayed together. He located and called a local crematorium, called and made arrangements for pick up and delivery, and paid for the whole thing.
When it came to names, we didn’t choose any for either because I felt rushed and didn’t want to give them a name just because there was a spot on the birth certificate for it. I wanted time to think and thoughtfully choose a name for my children so when Sikmon filled out both the birth and death certificates we simply put Baby A and Baby B in the spot for their name.
After everything was said and done we returned home feeling empty in more ways than one. After a week of laying around on the couch just mindlessly watching bad TV, we decided to book a quick trip to Seattle just the two of us. We just wanted to get away from it all and forget what had happened. Anything to feel normal again.
The weeks and months that followed were hard. I couldn’t speak about the twins for a year afterward without a giant lump forming in my throat every time. But as days and weeks and months passed by it got a little easier.
There are still moments today when something will happen and we say “imagine if we had twins” or “I wonder what the twins…” but we’re in a place now where we feel ok to talk about them and not totally break down. We celebrate their life by participating in the OC Walk to Remember every October and year will be our 4th year walking in their honor!
The biggest advice I can give anyone going through something similar is to give yourself grace. Allow yourself to cry whenever, wherever the tears start flowing and find a support outlet. The biggest thing I did for myself was get involved in the walk. As sad as it is to see all the families there who have lost babies it’s strangely comforting to know that I wasn’t alone in my loss and in my grief. If you’re struggling through something like this today, I hope my words bring you a little comfort. You are not alone and happiness is on the other side!