Twin to Twin Transfusion Syndrome, Our Story
Photography by Sarah Renzoni
Our story…..
Today is the third birthday of our two angels Hunter and Chance. I thought it would be fitting to share our story. I am not sharing this to scare anyone, but more to bring awareness to this syndrome. I want to bring hope to those that have lost a baby or babies, struggled with getting pregnant, or miscarried. There is no cure for this particular syndrome, and the doctors still do not know why this happens to some identical twins and not others.
Jimmy and I had struggled to get pregnant for about 18 months. For those of you that have struggled, you know what this process is like. A lot of hope and dreaming, the two week waiting period, and sure enough a whole lot of let down. When we found out that we were finally pregnant, we were both beside ourselves. We were over the moon and couldn't wait to share the news with everyone!
I will never forget our trip to the doctor for our first ultrasound. As we were getting ready for our appointment, we kept on talking about how amazing it would be if we found out we were having twins. As we were waiting in the room for the doctor, Jimmy was so excited and nervous that he told me he was having an out of body experience. Our doctor starting doing the measurements during the ultrasound, and as she was doing that, Jimmy asked, “So you just found one baby?” The doctor said that she hadn’t looked yet, and as she moved around, she said, “And there is another one!!!!” We were both hysterical!!! We couldn't believe our ears. How amazing after trying for 18 months?? We were finally blessed, and it all seemed to finally make sense. As she continued to do the typical measurements of the baby, she had a concerned look on her face. She explained that the twins were sharing the same placenta, which meant that they were identical twins. I really didn't think much of it, other than, oh my goodness, we are having identical twins!! How amazing!?!?! She pulled us into her office and discussed her concerns, but she seemed positive. She explained to us that we would have to have more ultrasounds to monitor the babies, which made us feel more at ease that they would keep a close eye on them. We were just beyond excited to have identical twins!! It was amazing to share the news with our friends and families.
On our 2nd ultra sound, which was at about 14 weeks, I was feeling pretty anxious. I can still remember sitting in the waiting room, getting sick to my stomach. Now looking back, I believe I was sensing that something just wasn't right. When we went in to the doctor’s office, I started to talk to the doctor and told him that I was concerned about the babies. When we had met with the doctor, she explained that we would be seen more often to monitor how both babies were doing. When he did the ultrasound, he spent quite a bit of time looking at both babies. He showed us how the amount of amniotic fluid around Baby B was much bigger than the fluid around Baby A. He went on to say that he did have a concern for Baby A, and he wanted to set up an appointment with the specialist right away. As he was telling us this, our hearts were broken. How could this be?? I was extremely upset when we left the appointment, but Jimmy, the positive guy that he is, convinced me that we had nothing to worry about, and the doctor was just being cautious. He put me at ease and we waited the weekend until our appointment with the specialist in Providence.
When we arrived at the appointment with the specialist, emotions were running through both of our bodies. The wait seemed like forever. We finally met with the ultrasound tech, and asked if we wanted to know the gender. Of course!!! We couldn't believe we were having BOYS!!!! How exciting!! But as excited as we were, we were both anxious for the specialist to come in and take a closer look at them to make sure everything was ok. The doctor took a look and told us that it looked like the twins were in stage 1 of Twin to Twin Syndrome. Our whole world fell around us. How could this be?? This wasn't supposed to happen to us. They took us into another room to meet with the doctor and specialist to answer any questions we had. There was so many questions, but I didn't want to know the answer to them. After explaining the statistics and the likelihood that both babies would make it, we were determined to be that small percentage. They did tell us that some babies can stay at stage 1 the whole pregnancy, and never progress. They also went into the risks and options that we would have.
Twin to Twin Syndrome is a disease of the placenta that only affects identical twin pregnancies. They share a common monochorionic placenta. They are basically sharing the nutrients from the placenta. They can start to share the placenta unequally, and that is where there becomes a concern. One baby is receiving all of the nutrients (Baby B-Hunter-in our case), and the donor baby (Baby A-Chance in our case) is working extra hard to get the nutrients to the other baby. They monitor this by measuring the size of each baby, and amount of amniotic fluid each baby has. When we first got diagnosed, Hunter had about 6 cm, and Chance had about 3 cm. We set up our appointments to see the specialist once a week, so they could monitor the amount of fluid each baby had, and how they were progressing. It was such a tough day. We were so excited to find out that we were having boys, yet we were told there was a good chance that one of them, if not both of our sons would not make it. They discussed the option of doing a laser surgery where they would laser the blood vessels that they were sharing on the placenta, but that would only happen if the babies progressed to a later stage. They explained that often times both babies do not make it through the surgery and if one did not make it, I would carry both full term. I kept on asking the doctors, what can I do for them. I was willing to do anything. The only advice that they could give me was to drink ensure drinks at least twice a day. They said that was the only recommendation that they have seen make a difference. Of course that night I ordered cases and cases of Ensure drinks. We both left the appointment that day feeling very uneasy and lost. They gave us sites to look on, but I was so afraid to read the stories. I thought if I read too many stories with bad endings that it would get in my head. I only wanted positive thoughts. We had no where to turn but to one another. We decided to keep this news within our family and close friends, as we didn’t want to worry anyone with it. We wanted to stay positive, and keep on going like everything was fine. This was so tough. Everyone was so excited, while we still had this sadness that we kept to ourselves. I can remember breaking down often telling Jimmy that I didn't know if I had the strength to get through something like this. I couldn't help my babies. I felt so helpless and alone.
We tried to go about our normal lives and act like everything was fine. Our ultrasounds were set up for every Thursday, which made Wednesday’s very tough. Wednesday night I would start to feel very anxious. The weeks seemed so long, worrying that we would go to the appointment and they would say they didn't hear a heartbeat. I was a nervous wreck leading up to it. At the first appointment, the doctor was very positive saying that it looked like they would stay at stage 1. I tried to ask as many questions as I could, hoping for some answers, or for some predictions as to what was going to happen. There was absolutely nothing they could say to us to ease our minds. There is no way for them to predict this disease and how it progresses. Chance (Baby A) was always hard to see, but they said that there was always one baby that made it difficult to get a good picture of. At the next couple of appointments, we would hold our breathes until they could tell us that they could see both of the babies’ bladder. That meant that there was a sufficient amount of fluid around each of them and they were still in stage 1. We saw them kick and punch each other, and we felt more at ease seeing them all ready playing together.
As the weeks went by, we continued to see the specialist. We would have our small group of family and friends that we would text after every appointment to let them know that everything was ok. They stayed at stage 1 for a while. At a couple of appointments I was concerned that I didn’t see Chance move as much as Hunter. They put my mind at ease and told me that he was probably sleeping at the time. There was a scare at about 20 weeks. Our doctor told us that there was a concern about Chance’s brain and how it was developing compared to Hunter. Again, they had no way of telling us what this meant, but just that they would monitor it. He said that this was a direct correlation with the Twin to Twin, and this can happen due to the baby not having enough amniotic fluid around him. I can remember seeing him so cramped in the space that he had. It was heart breaking--with nothing we could do to help make this stop. We left there very scared, again, but still hopeful that we would be that miracle.
The next week, I started having a lot of back pain, and even went to my regular OBGYN to get checked. They looked at the babies and saw that everything was fine. I even saw Chance do a couple of somersaults, which made my day!!! I didn’t think anything of my back pain, as I chalked it up to carrying twins and my body adjusting to it.
Well, it was Thursday, and we were ready for our appointment. We knew that our doctor was away on a conference, and that his boss would be seeing us that day. I was a little nervous, as our doctor knew our boys, and could recite what their amniotic fluid was from week to week. When we went in, the ultra-sound tech (the same one we were seeing weekly) seemed a little off. I could tell something was not right, by the way the appointment was going. She brought in the doctor to take a look and after looking at both babies, she told us that they had moved to stage 2. I felt like my whole world was falling down around me. I had no control over the situation, and there was nothing I could do. They immediately scheduled an appointment for us to meet with the surgeon at Women and Infants Hospital for Monday. I could not believe that I had to wait until Monday. How was I going to live until then? I was a wreck. They told me they had to wait until then because the surgery consisted of several doctors, which meant they had to get the team together. We left feeling so helpless knowing there was nothing we could do to help our sons, just wait until Monday. That night, the hospital called me to set up a Ronald McDonald room for us before the surgery. It was like a bad dream. Was this really happening?
Friday came, and I continued to have back pain that continued to worsen throughout the day. As evening came, Jimmy and I decided to head to Women and Infants due to the intense pain I was feeling. We got there and they took a look at Hunter and Chance through the ultrasound and everything looked great. The doctors that saw me offered to remove some of the amniotic fluid to relieve some of the pressure, but Jimmy and I didn't feel comfortable because there was no one at the hospital that was an expert with Twin to Twin. We didn’t feel comfortable making that decision on our own. They reassured us that everything was fine, and they sent us home.
That night I was up all night with intense pain. I could not get comfortable. Early the next morning, we packed our bags to go back to the hospital. I just could not bear the pain anymore. We checked in again, and my parents met us. I was still in a lot of pain. The doctor was very positive and offered to give me a prescription for pain medicine. I kept telling him I didn't think I could make it two more days in that sort of pain. He did an ultrasound again and we heard both of their heartbeats. Before he let us go, he said he just had to check my cervix before I left.
From there, our whole world turned upside down. I will never forget the look on his face of pure horror telling me that I was 3 cm dilated and that I was in labor and there was nothing they could do. The sadness in his face was heartbreaking. At that point, Jimmy, the positive one, completely broke down and lost it. Those moments will never leave us as they wheeled me away. I am so thankful that my parents were there for us. Jimmy was trying to stay strong throughout the whole pregnancy, and at that point, he was unable to. I was numb to it, and of course they had then given me a ton of medication so the tables were turned and I was comforting Jimmy. Something must have told my parents that they needed to be there with us.
We gave birth to both Hunter and Chance that night. Chance was not born alive, and Hunter was. The day went on what seemed like forever, and everything that could go wrong, did go wrong. We were able to meet both of them and hold them in our arms. I do not remember everything that happened that day. I have flashbacks to random events that happened. I still have the paperwork to go through but I just haven’t had enough courage to look through it. Our complete family was there for us and stayed to support us the whole entire day. They met both Hunter and Chance, and were able to say good bye. I was in total awe of the doctors and nurses that helped us that day. God bless all of them and the hard work they do day in and day out. They became our best friends for those 12 hours, and we relied on them to help us through one of the most difficult days of my life.
I will never forget the support I had from my close family and friends. The healing process was almost more than I could handle. There was so many questions and what ifs that we kept going through. Why couldn’t they have waited 2 more weeks so the hospital could have tried to save them. They do not try to save the babies before 24 weeks. I never would have dreamed that we would have to bury our two sons before even getting to know them. What did we do to deserve this? Did I do something wrong as a mother? We went through a lot of counseling, me especially as I struggled a great deal. I know that there was nothing that I could have done to save them, but it took me a long time to understand that. I just wanted to understand why this happened. I just wanted them back in my arms where they belonged.
So it’s 3 years later, and I’m here to say that the healing process does get better. I never would have imagined that I could have even written something like this. For a long time, I was unable to talk about them without completely breaking down. The pain is still there, and there are still moments that take my breath away from flashbacks to what happened that day. The pain is different now, though. A dear friend brought me this book, which helped me not feel so alone, and such a lonely time. Time was big factor. The support and encouragement I got from Jimmy and our family was what got me through the most.
As most of you know, I went on to have a beautiful baby girl 1 year and 3 months later. That was when the true healing process began. I distinctly remember taking this picture with her, and sobbing afterwards with tears of joy.
This is what I always dreamed of. This is what I thought I would never have. I was finally at a point in my life where my heart was full again. I want to encourage those of you that are struggling to get pregnant, or struggling with a pregnancy loss or miscarriage to have faith and don’t give up. Some days might seem unbearable, but there are better days to come. Keep pushing forward and use your support system as much as possible.
You never know who you will inspire or encourage, so I wanted to share this story in hopes that I can put a little faith back in some of you. The real healing started the day I held Kensie in my arms. All was finally right in the world.
~The best is yet to come.~
There still is not an answer or a cure as to why this happens to some identical twins and why it doesn't happen to others. To donate to the foundation to help doctors research and understand why this happens, click on the link below:
http://www.tttsfoundation.org/ways_to_help/donation.php
Photography by Sarah Renzoni
xo,
