Numb.
That’s all I remember feeling one year ago today lying in a hospital bed.
Numb with grief.
Numb with anger.
Numb with sadness.
Numb with guilt.
Three heartbeats – mine, Baby A’s, and Baby B’s – were now two.
Baby A was gone.
How did it come to this? Why did it come to this? Although painful, I’m going to take you through it…
My husband and I weren’t necessarily trying for a second child, but we were not not trying, if that makes sense. I was a few days late on my period and just had a gut feeling. I took a digital test, left it in the bathroom as it counted down, paced around the bedroom, came back in and saw the word ‘Pregnant’. There is no rush like getting a positive pregnancy test. In one moment your whole life changes. Dan came home from work that night and I walked right up to him and showed him the test. I believe his reaction was ‘What?!’ We were both excited. Luke had no idea what was going on but I was so happy he was going to be a big brother. I called my OBGYN to break the news and they scheduled me to come in on December 20, 2019.
The appointment played out like a scene in the movies. I was lying down as the doctor did the ultrasound. That first appointment is so nerve wracking. Am I far enough along that there’s a heartbeat? Am I even pregnant? As I held my breath, the doctor looked at my husband and I and said ‘’there’s two”. My reaction was “you’re joking” to which she replied, “I would never joke about something like this.”
Before we even had time to digest the fact that I was pregnant with twins, the doctor had more news, and it was concerning. From the looks of the ultrasound, it appeared that there was no membrane separating the twins. Medically speaking, this is what’s called Monoamniotic-Monochorionic (MoMo) twins – they share both an amniotic sac and a placenta. There are several risks associated with this kind of pregnancy, but the doctor said because it was so early (I was only 7 weeks) it was possible that the membrane wasn’t visible yet on an ultrasound. All we could do was sit tight, wait for our appointment in a week, and hope for the best.
That week of waiting was stressful to say the least. We just got this crazy exciting news but there was this huge ‘but’ involved. Pretty sure I spent that time reading every article possible about twins and the different types and the risks and anything else I could find. I mean I knew nothing about twins! When we had our next appointment, we got the news we were praying for. On the ultrasound you could see this very faint line, meaning the twins were now classified as Monochorionic-Diamniotic (MoDi) – they shared a placenta but each had their own amniotic sac. It was a Christmas miracle.
Now, MoDi twins (and twins in general) also pose a set of risks. They occur in 3-4 per 1,000 twin pregnancies, which is why I was sent to a high-risk OBGYN (I should also mention that MoDi twins are always identical and always the same sex.) Fun fact: my high-risk doctor was Dr. David Principe, who, if you’re a Real Housewives of NJ fan, is Dolores’ boyfriend. I would be seeing him way more frequently than I would if this was a singleton pregnancy. I remember during one of those initial appointments him mentioning the possibility of twin-to-twin transfusion syndrome (TTTS) occurring. This is a condition in which the twins share unequal amounts of the placenta’s blood supply, resulting in the two fetuses growing at different rates. I remember him saying it was pretty rare. To be exact, it occurs in 10-15% of Monochorionic (placenta sharing) twins. I kind of just brushed it off. I thought, that won’t happen to me…
As I mentioned in a previous post, I was getting treatment for an eating disorder while I was about three months pregnant, so it was A LOT. I was getting up at around 5 am every weekday to take a train into the city to attend the program. The nausea and fatigue were unreal. Two babies means twice the amount of hormones. I remember throwing up in the bathroom one morning at the train station. But I powered through and finished the program. I was proud. I was doing this for my babies. I was doing this so I could be the best mom I could be for them.
We found out the sex at around the 12-week mark. I’m not going to lie, I was disappointed when we learned they were boys. I figured after having the twins, I was done with having babies, and since we already had Luke, I wanted them to be girls. Looking back, I feel so stupid that I even got upset about that. I just wanted them to be healthy. I just wanted them to be ok. I wish that being sad that they weren’t girls was the extent of the sadness I would experience during this pregnancy, but that was nothing compared to what would happen two months from then.
On March 20, 2020 I went in for my 20-week ultrasound. If you’ve never been pregnant, this is a milestone appointment. They do an anatomy scan and everything is way more detailed than a usual pregnancy check-up. You’re half way there, it’s exciting. Well, it’s supposed to be exciting. Everything seemed fine as the ultrasound technician was doing what she needed to do. I heard the heartbeats, I saw them both on the screen, it all felt pretty routine. Then she said she needed the doctor to come take a look because I had a lot of fluid. He was at one of his other locations so I had to sit in the waiting room for about an hour until he got there. I was frantically texting my husband and my mom. I looked back at those texts, one of them to my mom says ‘I knew something was up I’ve been so uncomfortable like walking is hard’. This was true. The past couple of weeks I had felt like my stomach was REALLY big, but, I figured I was having twins so yeah, I was going to get big. I didn’t think it was a cause for concern. I literally remember Googling ‘excess fluid twins’ while I was waiting and TTTS popping up. I was reading all about this condition that my doctor would later diagnose the twins with that day.
After Dr. Principe took a look at things, he came in to tell me that it was TTTS. He drew it out on paper to help me visualize what was going on. He said there was a solution called laser ablation, a procedure that stops the abnormal fluid exchange between the twins and halts or reverses the disease. But then he wanted to take a look at things again, and that’s when the diagnosis got worse. He told me that in addition to TTTS, Baby A’s brain was not developing the way it should. I don’t recall all the correct medical terms he used, I just knew it was bad. But I thought ok, there’s that procedure that will fix all of this. At that time my husband called (remember, this was right when the pandemic started, no one was allowed to accompany me to appointments). I couldn’t speak when I answered. Everything was happening so fast. Dr. Principe took the phone, and in the middle of me having what felt like this out of body experience, I heard him utter two words I will never forget: “selective termination”.
It was not hard for me to determine what that meant – he was suggesting that most likely, our best option in all of this would be to terminate Baby A’s life. I was in shock. This wasn’t real. Not me. Not our twins. The next thing I knew, Dan was on his way to me and I was on the phone with the Children’s Hospital of Philadelphia (CHOP), scheduling a comprehensive evaluation for that following Monday (it was Friday). I have to give Dr. Principe praise here. He always recommended the best of the best and was on the phone with a connection he had in a matter of minutes. After the evaluation we would meet with a doctor to discuss our options. It is unbelievable that I walked into my doctor’s office that day with zero clue that my babies’ lives were at risk. Dan and I left, got in the car, shut the doors, and broke down.
On Monday we headed to CHOP first thing in the morning. My mom had flown up from Florida over the weekend to come with us. If there was anyone that I needed more, other than my husband, during all of this, it was my mom. It was a full day of tests: a 2-hour ultrasound, fetal echocardiograms, MRIs of both of their brains. The entire time I was praying that all of this would reveal that it wasn’t as bad as Dr. Principe thought. That Baby A’s condition could be reversed without affecting Baby B. Unfortunately, my prayers were not answered. After all the tests were done, they sat us down in a large, sterile, white conference room. The doctor came in and started explaining the results and confirmed everything Dr. Principe had suspected. She started discussing our options and all the statistics associated with them. We could choose to do nothing, which would most likely result in both babies dying. That was obviously off the table. So there were basically two options. The first was the procedure that Dr. Principe had originally explained to me – laser ablation. I don’t recall the exact numbers associated with this, but I believe it gave Baby A a 50/50 shot at surviving, and if he did survive, he would most likely have an extremely low quality of life because of his undeveloped brain. This procedure would also lower Baby B’s chances of survival. The other option was selective cord occlusion. It would stop the blood flow to Baby A in order to maximize the outcome for Baby B. Option 2 would end Baby A’s life, but give Baby B the best possible shot at surviving.
I couldn’t breathe. I keeled over in my chair, buried my head in my legs, and cried uncontrollably. The room was silent except for my sobbing. How were we supposed to make this decision? I don’t want to make this decision. I wanted to scream at the doctor – Why can’t you fix this? Why isn’t there another option that guarantees they live? Take me. Stop the blood flow to me. Let me save them, please.
As much as we did not want to make this decision, we knew it had to be made, and quickly. This condition can worsen fast. We asked for a day to think things over and the doctor allowed it. That next day was spent lying in bed, having conversations we never, ever thought we’d be having. I think we both knew what we felt was the right choice given the information we were provided. With the selective cord occlusion, we could pretty much guarantee that one baby would not only live, but also live a ‘normal’ life. With the laser ablation, there were so many unknowns, so many different scenarios. Would both live? Would both die? Would Baby A have severe brain damage? Would Baby A have manageable disabilities that we could work through? This option seemed like a game of Russian roulette. Still, I kept hanging on to the what ifs. I still struggle with the what ifs a year later. The what ifs haunt me. They bring me to tears. They paralyze me with guilt. But, we made a decision based on the facts we were given. We called the hospital and they scheduled the procedure for the next morning. I went to bed that night knowing it was the last time I’d go to sleep with Baby A alive in my belly. My husband and I talked to him. We told him how much we loved him, how sorry we were, how brave he was. He was our hero. He was going to save his brother’s life.
March 25, 2020. It was dreary out. The car ride to the hospital was a silent blur. We were brought to a hospital room, I changed into a gown, and waited for them to come get me. It was time. I hugged and kissed my mom, she was trying to be strong, but she was worried about me and I know she wished she could make this all go away. Dan was allowed to walk with me down the hallway until we got to a set of doors and had to part ways. They walked me to the doors of the operating room and I lost it. I was shaking. I was crying. I wanted to turn around. I even think I said out loud ‘I can’t do this’. We walked in, they helped me onto the ice cold operating table, I looked up, and what I saw is forever engrained in my head. I saw a screen that said ‘Fetus A’. Fetus A. I’d never get to meet Fetus A. I’d never get to hold Fetus A. Fetus A won’t get to grow up. He won’t get to play with his brothers. He won’t have a wedding or kids. He won’t get to see the world and try new foods. When I leave this operating room, Fetus A will be a memory, a memory I will try and keep alive for as long as I live.
It was over. I woke up in the hospital room. I was told everything went fine. Baby B was fine. I could go home in a few hours.
Life went on. Well, it went on as best as it could. As much as I wanted to curl up in bed and not face the world, I had to be strong – for all of my boys – it’s what Baby A would’ve wanted.
I spent the rest of the pregnancy consumed with fear. I saw my doctor every week, and every day in between getting ultrasounds was spent making sure I could feel Baby B moving and questioning every little ailment. At one appointment, while I was changing back into my clothes, I peaked at the documents in my folder. In that day’s log, I saw the words ‘remnants of Baby A’. That stung. They could still see parts of him. It wasn’t supposed to be like this. There shouldn’t be ‘remnants’ of my baby. There should be a heart beating, and legs and arms moving, not ‘remnants’.
I still had a lot of fluid and ended up having to get an Amnioreduction, which involves using an ultrasound-guided needle to remove fluid. Another procedure. More worry. More anxiety. At around 27 weeks, I started getting severe headaches. Out of an abundance of caution, Dr. Principle had me get an MRI. Another test. More worry. More anxiety. Everything looked fine, however they did see something (on my brain not the baby’s) that they thought was probably just a small cyst. I actually have to get another MRI with and without contrast in a couple of weeks.
Needless to say, the entire pregnancy was horrible. I just wanted Baby B to be here safe and sound. Of course he arrived in dramatic fashion. I noticed quite a bit of leaking one day and called the doctor. I wasn’t due for another month so I thought there’s no way I’m in labor, but they brought me in to be on the safe side. Thank god they did. My water had broken. At first they thought I could deliver vaginally but after taking a closer look they were worried about how close the umbilical cord was to the baby’s head. Much like everything else in this pregnancy, things went from 0 to 80. I had an emergency C-section and Liam Clark Cannici arrived just hours after us getting to the hospital. As I mentioned in my first post here, Liam spent the days following his birth in the NICU, then out, then back in, then out again. More worry, more anxiety. I started to think, “Will things ever be ok?”
Luckily, I can say that things turned around. Liam is a silly, smiley, thriving 8 month old. We named him Liam because it means ‘strong-willed warrior’. He’s my little fighter. Because the twins were identical, when I look at Liam, it’s like I’m looking at Baby A. I always envision Baby A right next to Liam, them looking at each other, laughing, Luke tickling both of them and bringing them their toys. Most nights as I’m rocking Liam to sleep, I gaze at the ultrasound photo of the twins that’s hanging on the wall in his nursery and I talk to Baby A. Through the tears, I tell him how I am always going to love him, that I’ll always be his mommy, and that I hope he doesn’t resent me. Frankly, there are a lot of times, especially on this one-year anniversary, that I resent myself. I blame myself for everything. I think I’m selfish. I know I cannot live like that but I don’t know how to ever come to peace with the decision we made. I try telling myself we did everything we could, but my greatest failure will always be that I could not save my child, and there will always be a hole in my heart that nothing or no one can fill.
And that is the story of Baby A. But his story is not over.
Someone once graciously shared with me that the saying “a mother holds her children in her heart” could quite literally be true. That studies have shown cells from the fetus cross the placenta and enter the mother’s body through her bloodstream, where they can become a part of her tissues, and that these cellular threads have been found to stay with the mother for decades. This gives me great comfort, thinking that Baby A is literally a part of me.
And even if he is not literally a part of me, he is still a part of me, and he still lives on. He lives on through Liam, he lives on through our tears, through our laughter, and through the words I am typing at this very moment.
Baby A.
Forever a son.
Forever a brother.
Forever a hero.
Forever our angel.
Kat's Corner 