TTTS Tuesday – Jonathan and Aiden’s Story

I often wonder how different my life would be today if Mary (founder of Twin to Twin Transfusion Syndrome Foundation) had never picked up her phone that day that a random stranger called her to ask her to help her save her babies. For that, my family will always be forever thankful.

Our story started on an exciting day in July. My husband and I were getting ready to meet with family at my Aunt Ruby’s birthday celebration. I had decided to take a few moments to take a pregnancy test at home prior to leaving. My husband and I had been trying for a very long time. To my surprise, it was positive!  This was the best news ever!

The pregnancy was going along as normal. One day in September 2008 I had to take a trip to the local ER. I was having pain in my lower stomach along with massive swelling in my hands, feet and face. I kept joking about how I “woke up looking pregnant today.” But, something kept telling me there was something more sinister going on. Something that didn’t need to be ignored. I was 17 weeks pregnant and had already had one ultrasound with no mention of a multiple pregnancy. So, to my surprise, after the ultrasound was finished, the ER attending physician came in to tell me that the “babies” were fine. It took me a few seconds, then I began to giggle and cry at the same time. Twins? Really? Yes, he answered. He smiled a gentle smile. He then laid his hand on my hand and his smile disappeared to a more serious, concerned face. He told me to get to my regular OBGYN first thing in the morning and have them repeat the ultrasound. It didn’t sink in at that moment, just how much my life was about to turn upside down.

It was so much fun telling my husband we were having two babies. It was a blast hearing my mother squeal with joy on the phone with the news. It was wonderful listening to my mother in law choke back tears as she whispered that she loved us on the phone and how happy she was for us. Our life was perfect.

The next morning I shuffled our son off to school and called my OB. I told them what had happened and to my surprise the receptionist knew I was going to be coming in already! She said they were holding an appointment for me to get there ASAP. I ran around to get ready, my stomach full of butterflies as I dreamed of two little babies! My husband and mom went with me to the appointment. All I could think about was.. are they boys.. girls.. one of each!? As long as they are healthy, that’s all that matters.. Soon enough the ultrasound was over. The doctor told us they were identical boys. Identical?! boys?! oh my! That means we will have 3 boys! You couldn’t hold the excitement back from us! Then, I heard the words that changed my family’s life forever. She told me the boys were suffering from Twin to Twin Transfusion Syndrome.  My thoughts froze. That’s such a long name.. it can’t be good…

She told me “these are the twins we pray for” she then sent me home with an appointment to come back in two months. There was no mention of possible treatment, or solutions. She only told me she was sorry.  I don’t remember driving home that day. I don’t remember walking in my home. But, I do remember searching the Internet for hours that night for information. I needed an explanation. What was this monster she said my babies were fighting? What could I do to help them? It was sometime in the middle of the night when I came across the Twin to Twin Transfusion Syndrome Foundation website and began reading. I read the blogs from the mothers that had lost their babies. I read the blogs from the mothers that had their survivors. I saw the statistics and didn’t like them at all.  I cried so hard my eyes hurt to close them. I found myself with my phone in my hand, wanting to call Mary to beg for help. But, I knew it was too late. All I wanted at that moment was for morning to come so I could call Mary. So, I sat on my couch for the remainder of the night and waited on the sun to rise.

As soon as the sun came up, I calmly made myself a cup of coffee. I sat down on my couch and took a few deep breaths. I then dialed a stranger’s number.  Mary answered the phone, I explained what had happened. She calmly told me where to go and what doctor to go see to get help. She gave me a list of questions to ask at the visit to find out how serious it was. She then told me that I had the power to fight this and to save my babies. I felt some comfort.

Mary had told me to go to Presbyterian Hospital in Charlotte, N.C. She told me to go straight to the maternity ward and “lie” to get in. Mary and I came up with a fake due date since the hospital will not see you until you hit a certain week in gestation. I then asked my father to take me to the hospital and we set off on a mission. It was certainly strange. I walked into the Maternity Ward, told them my fake due date, told them I was hurting, and wouldn’t you know it, it worked!!! The exact doctors Mary had told me would be there was! We had help! The Twin to Twin Transfusion Syndrome diagnosis was confirmed. They told me they were in stage 2. I was ordered strict bedrest and protein therapy.   We were sent to the best Maternal Fetal Medicine office available in Charlotte. We were given the option of termination of the twins by many doctors already at this point. But, I stood my ground to keep on with the pregnancy. So,  we began twice weekly ultrasounds and fetal dopplers to track their progress. Each time I stepped in that room it was to see if my babies still had a heartbeat. Imagine being pregnant and being forced to be on bedrest for months with two little people inside you constantly worrying about if they are still alive. Now think about the anxiety and fear of facing two ultrasounds a week to see if your babies still had a beating heart. Some things a TTTS mother will never get over from her pregnancy. And that is one for me. Then the Twin to Twin Transfusion Syndrome started getting the best of the boys. Jonathan (donor) was no longer making his own amniotic fluid. He was “stuck.” Aiden (recipient) was getting too much fluid and was going into heart failure. It was time to make a decision. We had to choose between amniotic fluid reduction, fetal laser ablation surgery, or terminate one in order to give the other a chance. None of the options gave us a good outcome for two survivors. Hardly gave us a chance for one survivor. We decided to go with the laser surgery since it was the most effective way to treat.

On October 7th, 2008 my husband and I got on a plane and flew to Tampa, Florida to have fetalscopic placental laser surgery by Dr. Quintero. It was the biggest leap of faith I have ever took. We were trusting the life of our babies to a surgeon I had never met before. We were given horrific details of what can and may go wrong during or after the surgery. We also knew we wouldn’t know if the surgery worked or not until the morning after the surgery was performed. But, it was a chance we had to give our babies.

We arrived in Tampa and began our battery of tests. It was awful. Each test passed was a step closer to surgery the next day. The scariest test was the fetal echocardiograms. The boys had to have a healthy enough heart to have the surgery. TTTS affects the hearts of twins drastically. They did the tests and told us we didn’t have much longer. Our “recipient” (Aiden) baby had an enlarged heart and was starting to show signs of cardiac failure. My poor baby Jonothan could no longer move at all. His bladder was gone. My heart started racing. I thought I was going to pass out. I managed to pull myself together and walk out of the office. We just needed to make it until tomorrow morning. The surgery was going to fix everything in a few hours. I was supposed to go back to the place we were staying and have a good night sleep. I instead found myself lying in bed praying for the sun to rise…

The next morning was a blur. I was checked in and hurried into an awful hospital gown. The nurse then said those dreadful words. “I have to check for the heartbeats.” I didn’t want to look at the monitor. I didn’t want to see the zeros if they weren’t there. But, wouldn’t you know it! There they were. My two babies were still there. I then went off to surgery. The best part about the surgery was the large T.V. monitor beside my head that showed a live feed from the camera they were using to do the surgery. I got to see the boys. I got to see their faces, their hands, and their feet. They were perfect. No bigger than a minute. But, big enough to change everyone’s life they had come into already. I began to cry. I mean the ugly cry. I was so overwhelmed with watching them. I couldn’t help but think that this may be the only time I see them alive. And I may be the only one blessed with that. The surgery took a little longer than some due to the fact that I also had another complication of TTTS. I had an anterior placenta which made the surgery more difficult for Dr. Quintero to maneuver. Once the surgery was over, I was taken back to the hospital room. No monitors this time. No readjusting those uncomfortable belts around your belly. We instead prayed and were told we would do an ultrasound the next morning to check for heartbeats and a bladder in our “donor” (Jonathan) baby. The only thing that was left to do now was waiting for the sun to rise…

But, something wasn’t allowing me to rest easy. I couldn’t pass the time. I couldn’t sit up to get comfortable. I kept feeling something wet between my legs. Surely I am not peeing on myself!! What is going on?! So, I push the nurse button. They came in and dismissed it. Told me to go to sleep. But, the leaking didn’t stop. So, I didn’t stop pushing the button. They finally told me I would have to wait on Dr. Quintero to come by in the morning and he could address if something was wrong. Once again, I found myself waiting on the sun to rise…

Dr. Quintero didn’t enter the room that morning. His assistant did. I explained to her what was going on. At this point I was frantic. I was sure I was leaking precious amniotic fluid. I was sure the nurses had known it all along and knew there was nothing they could do. I never even woke my husband up. I kept whispering. He had been through enough. I knew he needed a break. I would put my pillow over my face and cry until I was too weak to cry anymore. I would then push that button and try to convince the nurses to do something again. But, Dr. Quintero’s assistant knew it was urgent. She sounded the alarms. All of them! Within seconds there were too many nurses and doctors in my room to count. They began an ultrasound immediately there in the bed. She then delivered the news. My “recipient” (Aiden) baby’s water had broken! The amniotic sac had been punctured from the surgery. I once again felt my body going numb. I felt short of breath. They slipped the oxygen mask on me and told me to lay back. After hyperventilating for a few minutes I came around enough in time to notice Dr. Quintero standing firm and calm in the middle of a chaotic scene. He told my husband and I he was going to insert a needle to introduce a synthetic amniotic fluid to fill the sac back up and give my baby another chance of surviving. “DO IT!” I told him. So he did.

A few hours later we finally had our “official” ultrasound to see if the twins survived. By the grace of God somehow there they were. Two little hearts, beating away. But, now the next step. Do we have bladders on each of the boys? Yes! There they are. Two tiny bladders. Who knew you could ever be so happy to see urine!!! They made it. My babies had made it through! We get to go home now! All four of us get to go home. I couldn’t wait to fly home the next day to see our son that had stayed behind with my parents. I wanted to hold him and kiss him and tell him his brothers were ok. I didn’t sleep at all that night..I just waited for the sun to rise…

The marathon of bed rest had begun! Oh comfy couch of mine. It had become my best friend and my worst enemy. I had fell off of the face of the Earth as far as friends and society was concerned. I would pass the time by watching T.V. or researching TTTS on the internet. I learned how to find good deals online for holiday gifts! I was bummed I didn’t get to go out into the stores and look around. My husband snuck me out of the house once to the local Target to try to keep me sane. I begged him to take me Christmas shopping. So, he wheeled me around in a wheelchair as I looked around. And wouldn’t you know we would run into good friends of ours?! I laughed and tried to hide as we ran into them since I was about 50 pounds heavier since they saw me last, but, it made for good times! And, God Bless my family. They made sure I had my cooler full of drinks and snacks beside the couch so I could minimize my time on my feet during the day. Everyone helped get our son back and forth to school. My father became my weekly ultrasound chauffer and best friend. I tried to keep my mind off of why I was on bed rest. But, when you have two babies inside you, which are literally fighting for their life that’s all you think about. Would I know if something was wrong? Would I know if I needed help? It was torture. You become overwhelmed with the fears, thoughts, and “what ifs” that surround a TTTS pregnancy.

I also developed a raging case of gestational diabetes. I had to give myself four shots a day. Those weren’t bad though. Surviving Thanksgiving and Christmas in the south with diabetes is the hard part! But, the days slowly turned into weeks, which somehow turned into months. All I could do was wait for the sun to rise for the next day.

One night I woke up for one of my many bathroom trips. When I stood up I felt a warm sensation down my leg. I thought to myself, “how am I going to wake him up to tell him I peed in bed.” I waddled on to the bathroom.  When I was walking out of the bathroom I felt that warm sensation again. Only this time, it was on both legs. I reached down and realized my PJ pants were soaked. I panicked. I flipped the lights on in a fury. I found myself in a horror movie scene. I was standing in a puddle of blood. I began to scan the floor. The blood was everywhere. I screamed for my husband as I walked back toward the bed. I followed my own bloody path back to the bed where I saw what looked like a murder had occured where I was laying. How did I sleep through that?! Is this my blood? Is this my baby’s blood? Is it both? Are they gone? I couldn’t breath. My parents rushed over and we were off to the hospital. I don’t remember much after that. Everything is very foggy and I have tried to put the pieces I do remember together, but, can’t.  I know I heard their heartbeats when I got into the hospital room but, that’s about it. My OBGYN explained to me what happened. A complete placenta abruption had occurred. My placenta had fell apart and he told me to get prepared we were going into an emergency C-section immediately.

The first actual memory I have of the hospital is of the recovery room. I woke up alone. Nobody was there. Not even a nurse. I was in a small curtain type thing. Where is everyone? What is going on? Where are my babies? I began to sob. I lost them. They are gone. Nobody is here because I lost the babies and nobody wants to see me.

A nurse came shuffling through the curtains. She asked me what was wrong. My throat was closed. I couldn’t get a word out. Then I saw my husband. I managed to get the courage to ask. “Where are they?” I asked him. He said they were fine. They were in the NICU but doing fine.

I began to cry again. I didn’t realize it but my babies had been born for several hours by then. The nurses decided I had waited long enough to see them, so, they wheeled me into the NICU on my hospital recovery bed! On the way from the recovery room to the NICU I looked down what seemed to be the longest darkest hallway and I see my mom. “There is my mom,” I said as I began to cry. I waved to my family like I was a crowned princess on top of a car in a parade. I was proud. I had did it. I got them here to the world ALIVE!!!

The NICU is a beast of its own. It is a scary place to maneuver. When I laid my eyes on my twins for the first time they looked so pitiful. Their tiny bodies lay almost motionless in the incubators. They were both fully incubated with a breathing tube. They had multiple IVs going. Countless monitors and wires from all directions. Feeding tubes in place. Plastic was separating me from my babies. Are they cold? Are they hurting? Are they hungry? It broke my heart. I didn’t know how I should feel. How could I feel happy looking at them like this? I wanted to scoop them up and protect them. I wanted to take all their pain away. But, I knew it would get better. It was their first night in the NICU. They began doing every test and screening process available on the boys to check for problems. To our delight and relief they seemed to be no serious health concerns. Now we just needed to get some weight on them, get them breathing on their own, get them eating from a bottle and they can come home!  After a few weeks in the NICU they were weaned off of their breathing tubes and moved to CPAP for respiratory support. Day after day it was a sleepless scary rollercoaster. Never knowing if you could hold your baby that day or if they were too weak and they had to stay in their warm incubators always got to me. I always wanted to tell the nurses not to touch my babies, and don’t tell me I can’t touch them, they were mine. But, God Bless the nurses. But, our boys were so blessed! They had no major health concerns. Jonathan had to have a minor surgery to straighten out an inguinal hernia in his last week of the NICU. But, he flew through that with flying colors. Both boys came home after three months in the NICU. It was the best feeling in the world.

Finally after all of this fighting our family is together at home.  Our twins will turn 4 on January 18, 2013. If someone would have told me four years ago what we would go through I would never have believed them. But, I have my three beautiful children to hold every night. I have a one of a kind family that did everything they could to help us get through this. I am forever thankful to Mary and the Twin To Twin Transfusion Syndrome Foundation. And I am very proud to say I never gave up.