A few weeks ago, this image popped up on my newsfeed and I was thrown into an instant spiral of emotions.
(The image was posted from a community page I follow called A Bed For My Heart – for anyone that has experienced pregnancy loss, infant loss, child loss… run, don’t walk, to this page. It’s amazing).
I can make a simple assumption that it’s human nature to want to save someone, that no one in their right mind would ever chose to lose a loved one.. especially their own child. I can make a verified assumption that along with loss of a child – often comes guilt. The feeling that you could have done more, should have done more. So while I read the sentence “I’m so sorry I couldn’t save you” and it speaks what my heart is screaming – it instantly brings me to one of the most horrific, traumatizing moments of our journey. A moment when all of these assumptions were challenged and I was bullied at my absolute weakest.
I’ve mentioned in previous posts that our twin boys suffered from a rare syndrome called Twin to Twin Transfusion Syndrome (TTTS). In any multiple pregnancy where two or more babies share a placenta (often in the case of identicals) – the babies run a risk of acquiring TTTS. Oliver and Greyson were identical twins (one embryo split into two) and while they each had their own environment (amniotic sac), their umbilical cords connected to the same placenta (Tommy is their fraternal twin so he had his own amniotic sac and placenta) When the doctors first informed us of this set up (2 identical twins + 1 fraternal twin) we were warned of the 10-12% risk of our pregnancy suffering from TTTS and what would occur if it did happen. Essentially an imbalance of blood supply occurs between the two babies – instead of the placenta dividing the blood supply and nutrition equally between the two babies, the blood vessels direct all the blood to one baby (recipient) and the other baby is deprived of all (donor). If TTTS is caught early – there is an amazing technique called Fetal Laser Surgery where a doctor actually severs the connected blood vessels in hopes that each baby can maintain their own supply. The surgery obviously comes with enormous risks and depending on the outcome, health of the baby, stage of TTTS – it is not always successful and often one or both twins will not survive. Unfortunately, in the case of triplets when you have an ‘innocent bystander’ – the surgery is often too risky to even consider. So – from our initial ‘welcome to the world of a triplet pregnancy’ consult with doctors, we were warned that God-forbid we fall on those rare 10-12% odds – the mortality rate of our boys would be about 90%. Since there is nothing that causes TTTS (other than bad luck and a shared placenta) – we prayed that this wouldn’t be an issue for us and our doctors reassured us that from week 12 in our pregnancy they would start monitoring for any sort of imbalance between Oliver and Greyson.
Mac and I joke now that we will never go to Vegas because odds haven’t worked in our favor. At 23 weeks, our boys wound up in full Stage 4 Twin-to-Twin Transfusion with zero warning. Oliver was the recipient – he was already in heart failure and his entire body was filled with excess fluid (hydrops). When they first pulled up the ultrasound and scanned him – I didn’t recognize him as the same baby I saw a week prior. There was a 1″ dark outline around every bone and organ. His brain was surrounded by fluid. His heart was surrounded by fluid. His belly was big, round, and his organs just seemed to float within. When they moved the ultrasound machine over to scan Greyson, he was the polar opposite. He had zero amniotic fluid (they compare it to being covered in Saran wrap) – no fluid in his belly and a nearly invisible bladder. They checked on Tommy – who was showing no signs of distress from his sick brothers – and they ran a million tests on me to see if there was a reason this all came on so quickly. When all of my tests came back normal, the incredibly tough conversations began. “What now?”
I knew from my own research and hypochondriac questioning that I had zero options – but I wanted every single expert to tell me so. Our MFM group (maternal fetal medicine) consisted of approximately 8 doctors and there was not a single doctor that didn’t visit us the first few days of our hospital admittance. They were stumped at the severity of our case, the quick onset of the disorder, and the lack of solutions. Our boys looked so sick via ultrasound that Dr. I and Dr. M didn’t think they would survive a day or two. Surgery was off the table because of the state Oliver and Greyson were in and no one was willing to put Tommy at risk. In a rational state of mind – this makes sense. But my mind was far from rational. I was a 23 week pregnant mom who had just had a baby shower for her three boys, spent the previous weekend setting up their nursery, stayed awake at night trying to figure out if my new triplet stroller would fit into the elevator at preschool when I would have to take Riley to and from school. How was I going to sit in a hospital bed and just wait for my boys to die without attempting to save them? How do I make that decision and then live with it? I stayed wide awake for 3 days straight in the hospital agonizing over this and finally on the 4th day I was on a mission to conquer this battle. Maybe my doctors weren’t top experts? Maybe someone else out there in the world would say that my boys had a fighting chance?
It was about 9pm when I logged onto Facebook from my hospital bed. I held my phone under my covers in fear Mac would see the bright screen from my phone, wake up, and tell me to stop googling and torturing myself – that I needed to still take care of my mind and body – that I was still carrying three babies and needed to sleep. I started searching for TTTS Support Groups on FB and found a few that seemed active. I wrote a quick post on two of the pages begging for help – that I was a triplet pregnancy, with two boys in Stage 4 TTTS, and that my doctors were currently advising me to take a non-aggressive approach (aka: sit and wait) in hopes that our fraternal twin would survive. The comments and feedback were almost instantaneous and I had a hard time keeping up with all the new information being thrown my way. In summary – about ten different people directed me to a man named “Michael” who was one of the founders of a TTTS support network. Before I knew it – I was receiving messages from Michael himself telling me that all three of my babies have a chance and that I need to get in touch with the #1 doctor who specializes in Fetal Laser Surgery because he will save my babies. I sat up – yelled for Mac to wake up – and I filled him in on my late night FB conversations. A minute later I get a message from Michael with Dr. Q’s (the #1 fetal laser surgeon) personal cell phone number and an urgent message to call him immediately as he’s expecting my call. I threw my phone to Mac as it was already ringing Dr. Q’s line and sure enough, the doctor answers. Mac fills him in on our scenario – and much to our dismay – without being able to review our medical files, ultrasounds, lab reports – he agreed to our doctors’ approach and said “there isn’t anything we can do”. So there we had it – the God of all doctors in the world of TTTS said we were doing the right thing by not intervening and risking Tommy’s life. That if we did the surgery – we would lose Oliver and Greyson based on their health alone and we were giving Tommy a lesser chance at life. A no-win situation. I logged back onto FB and wrote a quick update to my post – thanking everyone for their quick support and guidance in helping us locate Dr. Q, but explained that unfortunately this isn’t a situation that can be saved and Dr. Q believed our doctors were doing everything they could. I fell asleep that night – feeling defeated but the tiniest bit proud of myself for putting up a fight, doing some extra due diligence and considering the odds.
The next morning, around 5am, I awoke to an inbox full of Facebook messages from Michael. I hurried to read in hopes that maybe he had some other unknown solution or superhero to connect me with. But instead, what I read shook me to the core.
“Sara – do you even want your children to live? Or are you just choosing death for them?”
“Sara – how dare you reach out to our group for support and then not choose to save your babies”
“Sara – do you know how many people out there are so thankful for doctors like Dr. Q and people who can save their babies lives? Do not ever use our resources when you don’t even want these babies”
“Sara – do not ask for help again. I’ve said my peace”.
I pulled myself out of my bed, left the my hospital room (which I wasn’t allowed to do without the assistance of a nurse or Mac), walked down the hall to where the showers were, ran inside with just enough time to throw up in the toliet and laid on the floor in full nervous breakdown. Shaking, screaming, truly believing that a nurse would find me dead because I was convinced that I would never catch my breath again. All of the thoughts I had tortured myself with – the judgement I placed on myself in a helpless situation – was now being told to me from a complete stranger. Someone who didn’t know me – who had never been pregnant with triplets – who didn’t know how f’n hard I tried to become pregnant and stay pregnant – and for sure as hell didn’t know what absolute torture it was to be told that I have to sit and wait for two of my three babies to die inside me. I stayed in that bathroom until my legs stopped tingling and I felt like I could physically walk back to my room and tell Mac what had just happened. While it infuriated Mac to the point of tears – the harder part of it was I watched his face change just as my soul had. There was now a greater sense of doubt and fear. This bully was making us question our decisions – making us wonder if we would face more judgement from people we DID know – and most painfully, if we really were just letting our helpless sons die.
Our team of doctors came in for their morning rounds and we filled them in on the nights’ events. While they rolled their eyes and shook their heads in disgust at the statements Michael said – it was obvious to them that we needed reassurance and quickly. They committed to getting us second opinions from all over the country and even one specialist abroad. And that’s what they did. The following day – a team of 9 came into our room and laid out all of the options they gathered from a TTTS specialist in Texas, one in California, and one in Belgium. Not one doctor said that we would walk away from this pregnancy with three babies and every single doctor kept their priority on Tommy surviving. A lot of the conversation was around the health of Greyson and Oliver – there was no way laser surgery would reverse their medical condition – but would it give one of them a chance to survive along with Tommy? The general consensus was that neither would survive the laser surgery, and if one did – they would not survive life post-delivery. The hardest part of these conversations was that I have never been afraid of a sick child. I was never fearful of having a child with abnormalities, challenges, delays – I have always had a strong belief that if God intended me to raise a child that needed extra assistance that that would be my purpose on Earth. If I were pregnant with just twins and in this situation, you better believe I would be on an operating table having laser surgery and fighting for whatever shot I had at saving my baby. But now I’m being asked to make a completely selfish decision that will impact the health of my children. If I were to have laser surgery and wind up in labor – the survival rate of a 23 week old baby is 10 – 30%. The risk of blindness, deafness, cerebral palsy are extremely high. So by having this surgery, I would be putting Tommy’s life in danger but potentially giving a fighting chance to Oliver and Greyson? Once again – how does any person make this decision and feel good about it? Our team of doctors sat in our room for over two hours going over the numbers, the outcomes, the hypotheticals, the what-ifs, and for majority of the conversation I felt like I was drowning.
We asked for the doctors for a short break so we could discuss all the information provided and right after they stepped out – Mac went to go fill up his water bottle. I am forever grateful for this moment because he happened to overhear the two top doctors talking about our situation and they both quietly agreed that if it were them in our shoes – they wouldn’t take on the risk of surgery and would proceed with the ‘sit and wait’ approach in hopes that Tommy would beat all odds and survive. Mac interrupted their conversation and they all returned to my hospital room with a clear direction of what our plan needed to be. Back to square one – we would continue to monitor the babies hearts until they stopped beating and pray that Tommy wouldn’t be affected by the change. I was exhausted, defeated, and sad at the confirmed reality that there was nothing I could do to save their lives.
Shortly after this torturous week I was able to sit down with my therapist and tell her about the chain of events. Her jaw dropped to the floor when I told her of the messages I received from Michael and her first question was “you do believe that you’re not choosing death for your children, right?” and I couldn’t answer her honestly. Did I know deep down that I wasn’t an evil person wishing harm upon my unborn child – of course. But I was so shaken by these disturbing message that I had very quickly lost perspective and self defense. She worked with me tirelessly – session after session – to remind me that I didn’t choose this, that I didn’t give up on my sons, that I would have done everything in my power to save them if I could. To be honest, it’s still a work in progress. It angers me to this day that some stranger could have such an affect on me – but he hit me at my lowest. At a time when I needed someone to say “You’re doing everything you can. I know how much you love your children and how much you love these babies. I know you want to save them. They know that” – I heard the opposite. And I was in no position to be my own cheerleader.
Even writing this blog gives me anxiety in fear of judgement, but it’s just one more step in the process of healing. I tell my two angels a million times a day how much I love them and I whisper that sad sentence…”I’m sorry I couldn’t save you” to them every single time I visit the cemetery. I’m hopeful that in time, I will be rid of all guilt associated with losing my boys. And I’m desperately awaiting the next time I cross paths with someone who needs a cheerleader instead of a bully – so I can fill them up with kindness, empathy, and love. Every single human being deserves that.
The Madness Between 