I will never forget that first 8 week ultrasound.
“Wait! Are there two?!”
I still carry some guilt with the initial thoughts I had at that first appointment. You see, I had vowed from the moment I got pregnant with the twins, (before I knew they were twins) to be more calm, less anxious, and trust God. I had a lot of first time mom anxiety when I was pregnant with our daughter and it ruined some of the joyous moments I could have had. So I was determined the second go around to not worry so much, I mean I had been pregnant before and knew what to expect. The moment the two heartbeats showed up on the monitor threw that all out the window, and the fear crept in all over again.
How would I manage three small children under two with a history of PPD? How would we afford the extra medical bills? How would we afford double of everything? Am I going to have to quit my job? We don’t even have a car to fit 3 car seats!
I started to cry. Adam my husband rubbed my shoulder and told me it would be ok and we would figure it out. We always do. The tech also rubbed my back and remarked how usually the husband and wife have the opposite reaction. The mom is elated and the dad is the one who starts to worry. That made me feel worse. Like what kind of mother was I? I wish I could take back those original thoughts because now both of our sons are dead and to think my biggest worry when first finding out about them wasn’t their health, but of myself and how I would handle it. I feel foolish now, even at a year later.
At that first appointment they determined that our boys were identical. Adam and I sat there in awe that they could tell that right away. They could see the thin membrane separating our two boys and the one placenta they shared, making them monochorionic diamniotic twins, AKA mono/di twins. They had separate sacks, but a shared placenta. Fraternal twins do not share a placenta (dichorionic/diamniotic). We met with my midwife from our daughter’s pregnancy and she informed us we would have to switch to a high risk OB and most likely see a maternal fetal medicine (MFM) doctor for the remainder of our pregnancy. We talked about Twin to Twin Transfusion Syndrome (TTTS) at that 8 week appointment briefly. For those of you who aren’t familiar with TTTS, it is a disease of the placenta in only identical twin pregnancies. It is the uneven sharing of blood vessels between the twins, resulting sometimes in uneven amniotic fluid, red blood cells, growth and nutrients. I remember thinking, that it only happened in 20% or identical twin pregnancies and it probably wouldn’t happen to us. My thoughts were so far from the risks associated with the pregnancy and only focused on how we would manage it all instead.
Our next dozen appointments went really well. We found out at 14 weeks they were most likely boys. We had their names already picked out, baby A was Abraham and baby B was Shepherd. We called Abraham our little wild man. He was always moving and grooving. Shepherd was the less active twin. I often wonder if this would have translated to their personalities as they grew up.
We started their nursery after the first trimester and purchased a van. We figured as I got bigger, it would be harder with our one year old daughter at home also to get things done. We wanted to prep as much as we could to make it a smooth transition from a family of 3 to 5. By then I had come around to the idea that our new normal would be as hectic as it was wonderful.
We had their anatomy scan at 20 weeks and we thought we had escaped a lot of bad news. The first trimester was over. We were told TTTS most often shows up before 18 weeks, although it can present itself at anytime during the pregnancy all the way up to delivery. By then I had probably had about 8 scans and I kind of dreaded them because they were over two hours long to get all the measurements for both babies and it was uncomfortable to lay on my back for that long at 20 weeks.
At 20 weeks they determined Abe had a pelvic kidney and echogenic bowel. Anatomically everything was fine with Shepherd. Our MFM told us it could be part of a genetic syndrome and suggested we do an amino or some more blood work. We agreed to the blood work and refused the amino because of the risk involved with it. I was told to come the following week for a cervical length follow up since mine was starting to shorten quite a bit. Our MFM also suggested I start making some phone calls to go on bed rest immediately. We were kind of stunned at how things were taking a sudden turn in the pregnancy. There were still zero signs of TTTS though, so we took that as a positive.
I went in a week later for my cervical check on my own. It was supposed to be a quick appointment, but when I got there they said there must have been a mistake and that they scheduled a full scan again. Ugh. I remember thinking, I’m not sitting for another 2 hour scan, I just had one! The tech started the cervical length scan and that’s when even I noticed that the amniotic fluid between the boy’s sacks looked uneven. The tech convinced me since we had a whole slot open, we may as well measure the boys and see how much they grew in a week. Halfway through the scan, our MFM came in really flustered. He didn’t have the best bedside manner and ended up grabbing the wand from the tech and scanning my belly himself. I remember starting to worry since the tech and him were both very quiet. It turns out he noticed something wrong with Abe’s heart and he didn’t like the uneven fluid between the boys. We know now that this was the beginning of TTTS and Abe’s heart was starting to show signs of heart failure. I was sent to children’s hospital the following day two hours away for a consult with two more MFM’s. That appointment was our wake up call. It’s when everything started to fall apart.
The blog post I wrote about that appointment at Children’s was incredibly hard to write. It was my first realization that we weren’t immune to something horrible happening to our family. It’s the first time I ever felt human and helpless. It tested our marriage and our support around us. We were left with really hard decisions. We had three appointments that day and they determined it was TTTS and the heart echocardiogram done by the neonatal cardiologist determined all of Abe’s heart issues were directly related from the strain of being what is called the “recipient” in TTTS. Shepherd was diagnosed as the donor twin. This was the reason for the almost absent amniotic fluid in Shepherd and the large amount in Abe. Abe’s heart was working extra hard to pump the uneven distribution between his brother and him in the placenta.
We decided to go ahead with the laser surgery on Monday just two days later. The idea of the laser surgery is to separate the vascular connections between the twins so there is no longer an uneven sharing. The odds for laser surgery aren’t great (50% both babies survive. And 75% only one lives), but even worse if we did nothing (85-90% they both die). We came back on Monday before the surgery and poor Shepherd was hardly moving. Our last image of him alive is him sucking his thumb. It pains me still to know his heart stopped beating while inside me after the surgery.
They wouldn’t let Adam be in the room with me when I got my epidural and he wasn’t allowed in the OR either. I found that really odd because he was there when I got an epidural for our daughter’s delivery. When they made him leave, I felt alone with my fear. It’s the last time I felt Shepherd move before the epidural started to work. The OR was full of about 15 medical professionals ranging from three people operating the laser, two anesthesiologists, two MFM’s, neonatologists, nurses, and some who were there to observe the not so common procedure at that hospital. I was really dizzy and sick during the 2 hour surgery. My blood pressure kept tanking and the anxiety of laying there for so long with no one telling me what was happening was paralyzing.
They were not able to get all of the connections to separate our son’s blood vessels in the placenta. Abe and Shep apparently had double the amount of vessels that our MFM has ever seen. And towards the end of the surgery, there was a bleed that obscured their view from getting those last two vessels. They also ended up taking just over a liter of extra amniotic fluid off Abraham at the end. I was relieved when it was over and Adam was with me again. I was told to get some rest and they would be monitoring me for contractions and check on the twins the next morning with another ultrasound.
That night was scary. I had contractions they couldn’t get under control for almost two hours. I begged for them to take out my catheter at one point because I felt like it was contributing to them. I told Adam over and over they weren’t listening to me and I just wanted to go home. By morning the contractions had subsided and I was feeling better. We were wheeled down to ultrasound the next morning and we silently stared at each other on the elevator hoping to see both of our sons alive. I had felt movement, so we knew one had to still be with us.
I don’t think anything can prepare you at 22 weeks to see your once living child not have a heartbeat anymore. Shepherd died sometime after the surgery in the middle of the night. I couldn’t stop yelling and crying that we killed him. Abe was still there moving and very much alive. We were sent home and told to come back in a few days to start monitoring Abraham.
They wheeled me to our car as Adam lugged our overnight bags. I was so angry at anyone who made eye contact with me on that long walk to the car. I didn’t want anyone to look at me because on the outside I looked like a normal pregnant woman. But on the inside I felt as dead as the dead son inside me. And every time Abe moved, I fell apart. I couldn’t escape the nightmare.
For the next three weeks we had appointments 3 times a week in Milwaukee at children’s to monitor Abe. We had to now worry about stroke, brain bleeds, anemia, his heart, growth, and so much more now. On top of preterm labor. I couldn’t watch the scans. After 22 weeks of seeing both babies alive, to now see Shepherd not with us on the screen was too much for me to handle. Abe’s heart improved in those three weeks and he showed no signs of anything else from the risks of the surgery. We stared to hope that maybe all of this was to save him. His brother Shepherd was his hero.
I landed in the hospital for a week for preterm labor at 25 weeks, but was finally sent home just before Halloween to see my 14 month old daughter trick or treat for the first time. I often wonder if I overdid it on Halloween. I pushed around in a wheelchair and was out of bed a little more than normal. That night I had a lot of shooting pain radiating from my pelvis and up to my back. My mom even stayed with me in bed for a while that night before going home because we were afraid I was in labor again. Looking back now, I am pretty sure that is when the boys flipped positions. Abe was head down near my cervix and Shepherd up on top the entire pregnancy. But we found out the next night that it had changed.
It was around 7 the next night and my water broke. I was laying in bed and felt Abe kick and then a pop like everyone describes. We made it to the hospital and after hours of them attempting to stop my labor, I delivered my boys. Shepherd came vaginally and Abe came a half hour later by emergency c-section. Their labor was an experience I never want to relive and I suffer from PTSD because of it. Holding Shepherd on my chest while they prepped me for the c-section was like an out of body experience. He was so tiny, but yet all of his little toes and fingers were perfectly formed.
Abe was born and went straight to the NICU with Adam. We still felt hopeful because at almost 26 weeks, he was 2 lbs 2 ounces with an APGAR score of 8! And for three weeks in the NICU, he did amazing. It was such a draining journey. I was trying to balance recovering from delivery, a uterine infection I contracted, my 14 month old daughter, pumping every 2 hours, traveling back and forth from home to the NICU since we couldn’t stay overnight, planning Shepherds funeral, and all the postpartum emotions. I sometimes look back and can’t believe we survived it all. How did I not crumble into a big ball and not give up?
Those three weeks were exhausting and I was running on empty, but I was running on the high of my surviving son doing so well. The start of the 4th week, Abe’s lungs collapsed and he never fully recovered. The day his lungs collapsed broke me. They didn’t think he was going to make it. And after getting a chest tube in him, we sat by his bedside watching his stats drop. I had to leave and left Adam crying there holding Abe’s hand. A half hour later a nurse came and got me, they had started nitrous oxide for Abe and his stats slowly came back up. They deemed him stable and his eyes opened again. We were so grateful.
I only left the hospital once the next week to come home, shower, and drop off breast milk. The staff let me stay in one of the rooms there as an exception. I missed my daughter terribly as well and felt so torn for the first time as a mother between her children. Thanksgiving was that week as well and the whole staff convinced me to finally go home and eat and celebrate it with my family, so I did. I will always regret leaving Abe that day. We called on our way home from Thanksgiving at my parents and they said he was doing awesome and that maybe I should enjoy sleeping in my own bed for the night. I agreed. We hung up and started to unwind a little with our daughter. Then we got a call back from the NICU a half hour later. Abe’s stats plummeted and they had to put him on a paralytic drug. We never saw our son awake again after that.
Over the next few days Abe declined. His lungs over expanded squeezing his heart and causing his circulation to diminish along with his oxygen and organ function. That Sunday they told us there was nothing more they could do for him. I knew this to be true because that last week I had researched so much with different medications and steroids that they obliged and gave him. None of it worked. Our boy was done fighting his battle.
We decided to pull his intubation tube because we couldn’t watch him code again with us standing there helplessly knowing he was dying. His death is something I will never get over. They closed the curtain to the NICU room that he shared with four other NICU babies who were all going to get to go home. I wish we had a private room to properly say goodbye. Instead as they placed him on my chest, all that separated us was a thin curtain from other crying babies who were going to be fine. It seemed incredibly unfair that everyone else around us got to bring home their child and we were not.
I still haven’t washed the shirt I was wearing the day he passed away on me. When Abe died, our last hope went with him. We walked out of the hospital in silence. I’ve never felt so empty. The moment when you hand over your child for the last time is gut wrenching and yet I had to do it twice in one month.
I walked around like a zombie for days. A week later my husband went back to work and I stayed home alone to take care of our daughter. I couldn’t believe life was going back to how it was before and yet I didn’t feel like it could. Because everything around me was the same, the problem however was me. I wasn’t the same and it took months for me to line up my before and after. In fact, a year later, they still don’t line up.
We sold our home and moved, I couldn’t bear to look at the half done nursery with two cribs. We leaned heavily on our faith and the people around us, but at the end of the day our experience was and has been incredibly isolating.
I wish I knew that you could do everything in your power for your children and it still might not save them. I never fully prepared myself for the worst case scenario. And because of that, I now see the worst case scenario in everything.
I also wish I knew that I would lose relationships because of my grief and that anger would be a regular and real emotion.
I am still pretty fresh in my grief, but reading other stories from fellow TTTS moms gives me a lot of hope that the pain and anger will be eventually replaced with acceptance and forgiveness. I am just not there yet and that is more than OK.