When Joy and Loss Coincide: The Story of Triplets

Laura and her husband Evan had been trying to become pregnant for years when they got the surprise of a lifetime: they were pregnant with triplets. All along, they knew their pregnancy was considered high risk, especially because their triplets included an identical twin pair. Nevertheless, Laura and Evan began to feel hopeful when their triplets were still thriving at 24 weeks gestation (the earliest age at which an infant can possibly survive out of the womb). Up until that point, they had held off on buying things and truly imagining what their life would be like. Passing viability meant that their triplets had a good chance of survival: Laura and Evan realized that they needed to get ready. They began to do research on other triplet families and how they’d coped, began to put together a registry that included three of many things, and began to envision how they would incorporate three newborns into their house. 

All that would change in an instant just over one week later. 

That day,  Laura and Evan arrived for their regularly scheduled ultrasound at the maternal-fetal medicine clinic expecting to be seen quickly and head off to work. Little did they know how quickly things would change. Moments after the sonographer finished the scan, a doctor came in and told Laura and Evan that despite having seemed healthy just two weeks ago, right now he was seeing very severe “Twin-to-Twin Transfusion Syndrome” (TTTS) in their identical twin pair. TTTS happens when identical twins, who share a placenta, have unequal blood supply, which causes one twin to get too much blood– and therefore produce too much amniotic fluid– while the other gets too little blood and does not produce enough amniotic fluid. The situation is extremely dangerous for both twins. Laura and Evan had to make a decision– and they had to make it fast. 

The option was put on the table that all 3 babies could be delivered, but at a very high risk to all three. At just shy of 26 weeks gestation the boys would be micro-preemies and would face a myriad of complications. If they did nothing, it would almost certainly result in the death of the identical twin pair. A third option was a complicated laser surgery, in which a doctor would use a scope and laser to map out the blood flow of the twins and systematically laser shut the vessels that were problematic; hopefully giving each twin equal blood flow. The complicating factor was that the nearest place that could do such a surgery was located in New York City. The TTTS was severe enough that if surgery was going to be considered, it would have to be immediate. 

Within the half-hour, Laura and Evan left Baystate and were in the car headed straight for NYC. Upon arrival, Laura was assessed and admitted for surgery. She was taken into the operating room, given an epidural, and prepped for the procedure. 

 It was only a few minutes into the procedure when Laura heard the words she had been dreading: the doctors could no longer detect a heartbeat from the recipient twin. One of her identical twin boys had died, leaving his twin at a very high risk. Laura recalls, “I was just lying there, in shock. Tears were rolling down my face.” As continuing with surgery was no longer necessary, the doctors performed a fluid transfer: extra fluid was taken from the recipient twin and given to the donor twin to try to give him a fighting chance. Laura was wheeled out to recover. Arriving in the post-op room, she saw her husband hopefully waiting. She remembers that she couldn’t even speak. Fortunately, the doctor broke the news. Laura and Evan were left to wait as her epidural wore off, behind a curtain within earshot of other families who were meeting their healthy babies for the first time. As they sat holding each other, slowly processing their pain, around them others wept with joy. 

Laura and Evan were moved to a semi-private room in the wee hours of the morning, and at their next scan later that day they learned that their other twin had passed away during the night. Laura says, “I was expecting that the other twin wouldn’t last very long, but I was always hopeful. When we went in for the ultrasound, I was still very much in shock – it had still been less than 24 hours since I walked in to our appointment in Springfield thinking everything was fine. But when the tech put the ultrasound on my belly, we knew before they said anything. We could see that there was no heartbeat on two of the babies. After the tech scanned the twins, she moved the wand to the singleton. We saw his strong heartbeat and we both burst into tears. He became the survivor. At that point the doctor came in and confirmed what we already knew- that we had lost the twins but that the singleton looked good. The doctor was very compassionate, but I do remember him saying that from a medical standpoint, this was probably the best outcome. He told us that while emotionally it’s not a great outcome,  it gives your survivor the best chance to make it full term and you the best chance to have a healthy pregnancy. This was the start of people trying to find the best in the situation- trying to help us to focus away from the loss and on our baby who had survived. 

“In that moment, we hadn’t even processed the loss yet. It had still been less than 24 hours and we were discharged from the hospital in New York and had to drive ourselves home to Massachusetts. In the car, we looked at each other and were like, ‘What even just happened?’ It felt like our whole world had changed. Everything we were planning for was based on the fact that there were 3 little boys: we were going to have a full basketball team! We had this exact idea of what our family was going to be: suddenly that was gone in an instant. When we got home it felt like there were logistics to take care of, but our heads were still spinning. We had to go back into the registry and reduce the quantities from three to one. It was the most surreal and awful experience”. 

Along comes Empty Arms

“Before the twins died, we were anxious, but our anxiety was centered around what ‘could’ happen. We knew that there were risks, but all the testing was coming back good, so there wasn’t something specific we were afraid of. Our fear was theoretical. After the twins died, the fear of losing the third became very real. It just seemed like nothing was guaranteed. I became much more aware of feeling movement and was much more anxious.” This is the point at which Laura found Empty Arms. While she hadn’t delivered yet, she had already lost two of her triplets. She had a healthy baby continuing to thrive in her womb, yet she knew that his outcome was not yet set in stone. Laura explains, “There were times where it was hard for us to even remember that there was a baby coming. For the whole pregnancy we had been expecting triplets, and now there were no triplets. Sometimes we would forget that there was still this little survivor, amid the grief for what had been lost. It took a long time for the excitement to come back”

At Empty Arms, our first goal in supporting Laura and Evan before their babies were born was just holding space for their loss, and the resulting anxiety they were feeling. During frequent phone calls, I can recall saying to Laura, “I feel as if I’m holding a space for you that is at once the bereavement group and the subsequent choices group. You are feeling all the emotions that I typically associate with people who are pregnant again after a loss, except that you are still in that pregnancy where your babies died, waiting for your survivor to be born”. The emotional journey of this pregnancy was enormous. Laura shared, “I was still carrying all 3 babies, I would still deliver all 3 babies when I went into labor but only one of them was living. I was in an in-between space – in limbo. We were grieving the loss of our babies, but we still had one living baby to care for and prepare for. It was such a weird state of mind. You feel all of that at the same time. It’s hard to describe. I don’t think that there are a lot of situations like that”. 

Our second goal in supporting Laura and Evan was to gather information to help them to feel prepared for their birth. By the time their living baby was born, it was possible that their twins would have been deceased for two months. We wanted them to have as much information as possible to be prepared for what that would be like, and in order to do that we had to reach out to our national connections. Never in the history of our organization had we met someone in this exact situation: but we knew those people were out there. Fortunately, our connections we’ve made through the Perinatal Loss and Infant Death Alliance proved priceless: within a few days of reaching out, we not only had several anecdotal stories of families who had experienced losses in multiple pregnancies that we could share with Laura and Evan, but also a detailed statement put together by one of the leading Perinatal Loss experts in the country specifically for their situation. While Laura and Evan were not sure yet whether they would want to see the twins, they certainly knew that without a good sense of what that situation might be like they would be unable to make that decision. We were grateful to be able to do this for them so that they would be capable of making an informed decision. 

The Babies Arrive

While Laura was scheduled for a c-section at 37 weeks, her water broke at 34 weeks. Fortunately, there were no complications with the delivery, they performed the c-section that day, and when her living son, Quinn, was born, Laura heard the cry she had been longing to hear and fearing she wouldn’t. “When he was born, they had the sheet up so I couldn’t see him but I heard his cry: I just started crying– he’s breathing, it’s the first step!” While Quinn did need to go right to NICU, they were able to stop and let Laura see him on the way out. Quinn was stable and thriving, and Evan accompanied him upstairs to the NICU. 

Of course, at that time they also delivered the twins: at that point, Laura and Evan hadn’t decided whether they wanted to see them. Laura shared, “Carol really helped us think through this part. I wasn’t sure what they would look like, and I had memories of them from ultrasounds and remembered feeling them move, and I was worried that if I saw them and they looked really bad that it would disrupt those memories. But I also wanted to see them. They were our babies. So we were both really torn. We didn’t see them right after they were born, but the delivery team knew that we were undecided so one of the nurses wrapped them up, and put hats on them and kept them safe for us so we could decide later.”

Lisa Hamilton from Empty Arms came the next day. Throughout the last month of Laura’s pregnancy, Lisa had been texting and calling with her, so she was very familiar with Laura’s story. Also, like Laura, Lisa had experienced the loss of a multiple and waited to deliver– she knew well the feeling of delivering one living baby when more had been expected. Laura shared, “Having Lisa there was so helpful —  to have someone who knew and understood our story, and how we were feeling. It was obviously in our charts and while we were there, everyone who came in would start off saying, “I’m so sorry about what happened” and while I appreciated it, it was almost constant. We also had a couple of people who came in and wanted to make a connection by sharing their own story of grief: one nurse had lost her brother not that long ago, and somebody else’s mother had passed away. They wanted to share those stories with us to connect, and I understood it, but I also felt like they didn’t understand how we felt. Being able to talk with Lisa meant we didn’t have to worry about somebody who’s just learned our story and is feeling a lot of sympathy for us. We didn’t have to take care of Lisa or hold the weight of her story, yet we knew that she had gone through something very similar. She felt like a breath of fresh air.”

“When Lisa came she brought with her three stones from the beach, which she said made her think of us, that was very meaningful to me. Just knowing that another person was thinking of our triplets– our whole family– and having something physical to represent that with the three stones”. The other thing that Lisa did which was very helpful to Laura was to go in and spend some time with the twins, taking photos and making mementos such as footprints for Laura and Evan. Laura says,”That was really helpful because I was able to get her opinion on what they looked like to help us decide. That was really weighing on me. We were still in the hospital, going to NICU, trying to figure out breastfeeding, but there were my twins who we hadn’t met yet. Hearing Lisa share what she had seen with the twins really swayed us to decide to see them. She didn’t say “I think you should see them”, she just said, “Here’s what I thought when I saw them”. So that really helped us to decide to see them. I decided that while I might regret seeing them, that would be better than regretting not seeing them.”

And so, later that day, the nurses set up a private room for Laura and Evan to meet their twins. The babies were wrapped up nicely in swaddles and Laura remembers that “just immediately I could see how they looked like Quinn. They had dark hair, and they were bigger than I expected them to be– they could have been born and survived. We both started crying and we talked to them. We didn’t stay too long, but it was enough. We were able to say goodbye. And then, we went immediately to Quinn in the nursery. We didn’t get to see our triplets all together, but we did see them back-to-back. So while it was hard to see them, I’m really glad that we did.” 

Support after going home….

Quinn was in the NICU for two weeks, and while he was in the hospital Empty Arms helped Laura and Evan to make arrangements for their twins with a local funeral home. Laura shares that at this time, the Empty Arms website was very helpful, particularly in determining how to tell their families what they needed. They shared the website and links to family and friends which offered them guidance as to how they could be helpful to Laura and Evan. 

When Quinn came home, Laura– like every mother– was totally consumed by life with a newborn. A few months later, when Lisa called her to let her know that Empty Arms was going to be holding a group for families who had experienced losses in a multiple pregnancy and were parenting survivors, she wasn’t sure if she even wanted to attend. She says, “Support groups are not really in my comfort zone, but I thought it might be helpful to carve out time to do some reflection. I was still thinking about the twins, and I didn’t want to just move on. I wanted to have time to really think about them, and reconnect with that grief, honestly. That was what pushed me towards joining the group.” 

 Laura shares that having this dedicated space to check in with herself, to process the feelings that come with parenting a survivor, keeps her going to group month after month. She shares that hearing other parents worrying and feeling some of the same things and having similar experiences helps her to feel she is not alone. Struggling with difficult emotions, such as those that come when she hears that someone else is pregnant with twins, makes her feel less lonely. 

This month, Laura and Evan sadly marked the 1 year anniversary of the loss of their twins. Laura shares that being able to connect both with people who are also coming up on their anniversary, as well as hearing from others who are a few years out and can help to teach her of the ways to keep their children in their lives, is really helpful. She shares that speaking with  these other parents helps her to understand which parts of her emotions are just normal parenting emotions, and which may more likely come from her experience of loss. She shares, “I don’t always get to talk about the twins and how I’m feeling. Partly just because it’s hard for people to understand. You have that moment of connection in the twin loss group. It really helps. It’s very validating to hear that you’re not totally out there in your thinking. 

One year after the triplets were lost through the death of the twins, Quinn is a joyful, happy, smiling baby who was born just two months before the whole world went into lockdown. At 10 months, not only does he not have his brothers, but he is living in the midst of a global pandemic that has isolated his family. Laura shares, “Now, as Quinn gets older, there’s a new grief where I feel so sad that Quinn doesn’t get to know his brothers. Through this quarantine he hasn’t played with any other babies or kids. He hasn’t gotten to meet them except across safe, socially distanced space. So I think about how I feel sad for him that he doesn’t have his brothers to play with. He has a loss too. He’s becoming his own little person and I’m feeling that for him.” We feel that for Quinn, too– and for his parents, who watch him happily playing by himself but know that his joy would have been multiplied by the companionship of his two brothers. We have been grateful to see Laura, Evan and Quinn through this journey so far– and look forward to the future, where their family will always be seen as one including three boys, and where Quinn is always viewed as a triplet– the lone survivor of a much wanted pregnancy in which all three boys are honored and loved.