This month is TTTS Awareness Month, and World Awareness Day is officially on December 7th. Across the world, families who have been affected by TTTS will be lighting candles, saying prayers, and walking in Memory of or in Honor of their special baby or babies.
If you would like to post a prayer for your special one, click on the picture below
In honor of TTTS World Awareness Day, I thought it would be appropriate to talk about Matthew and Steven, since it is their mother Mary who became the first major advocate for TTTS Awareness by starting the TTTS Foundation, and World Awareness Day is on their birthday. Happy 23rd Birthday Matthew and Steven (on Dec. 7th!)
Matthew and Steven – Mary’s Story
I met my husband when I was 14 and he was 17 years old in our hometown of Bay Village, Ohio. We dated for 6 years and got married at age 20 and 23. It was the year after my sophomore year at the University of Kentucky. I took a semester off, and then returned to a local college to finish my degree in West Chester, PA where we moved after we were married. After graduation, I worked a full-time job and saved all my paychecks for the down payment for our first house that we were dreaming of. Another 2 years went by and I was aching to have children. I was extremely homesick to move back to Bay Village.
In April of 1989, we were back in Bay Village for Easter. I have always been very private in my relationship with God. I grew up in the Bay Methodist Church, a beautiful church along the water of Lake Erie. When the church was empty, I went back and sat in the last pew. I bowed my head in tears telling God how deeply I wanted to come home, how all I have ever wanted in my life was to marry Steve, have children, and live in Bay Village. I said, “I want to go wherever You want and need me to go, but I hope and pray that I can come home.”
Steve had been looking for a new job for 2 years. When we came back to West Chester after Easter, within one month, he had a job coming back to Cleveland and at age 24, I was pregnant after the first try. We were going home. It was a miracle.
On Mother’s Day, I called my friend to tell her I was pregnant. I told her, “Maybe it’s twins!” It was not even a question, I knew.
We moved back home into my parent’s house so we could look for our first house. On July 20, I went to hear my baby’s heartbeat. We were very excited. The doctor placed the stethoscope on my tummy and we heard it. Then, I just looked up to him knowing there was more. I said, “Maybe you will hear another.” He looked at me strangely. Then, his eyes got big. He said, “My God, you are right!” This is a moment that truly has no words to describe the depth of the joy. I felt so chosen and special. My dreams were all coming true. My prayers, alone in my childhood church, all coming true.
The next day, we had our first ultrasound done to confirm our twins. I was alone with the ultrasound technician as she began. Then, she left the room get my husband and my mother. I could not wait any longer. I had waited 6 years to get married, 4 more years until getting pregnant. I had followed all the ‘rules’ in life to get to this point. I turned my head to look at the ultrasound screen. My two little boys were looking right back at me. It was the happiest day of my life. Later that same day, Steve and I bought our first house in our hometown of Bay Village, Ohio, 411 Longbeach Parkway.
I always felt that if you were a good person, nice to others and followed the ‘Golden Rule’, that if you were truly ‘there’ for your family and friends and followed God’s laws, that good things would always happen. It did not take me long to realize, however, that even good people have bad things happen to them.
Two days later, I was in the most severe pain I could ever imagine. It had been slowly approaching in the previous two weeks. Monday, I began what was 36 hours of screaming pain. It was all on my left side. I would have burning, shooting pain down my legs and up my back. We called anyone we could think of in our family and everyone had ‘answers’ of where the pain was coming from. I did exercises, positioned my body certain ways, and laid back in a Lazyboy chair, then struggled in bed. The pain would not stop shooting. I remember crawling to the bathroom and just crying from my soul. I kept telling my husband to massage the pain away, to chase it with his hands and make it stop. Then, at one instant, he grabbed my tummy in an attempt to massage it. I screamed the most horrific scream; “You just grabbed a tumor!” I could feel the ‘ball’ inside me. My husband turned white and his mouth dropped open. Slowly, he said, “Mary, if you are in that much pain you have to go to the hospital!” Never did that thought enter my mind. I cried with tears running down my face, No! I will NOT go to the hospital. If I go to the hospital that will mean something is wrong with my babies. I will not let something be wrong with them! I just got them and nothing is going to take them away from me!”
The night went on unchanged. The next day as well. Finally, we called our doctor and begged to be seen. It was not until that night at 7PM. In the waiting room, I could not stand, I could not sit, I could not move. I just was. Somehow, I slowly entered the exam room. The pain was excruciating. He tried to touch me and I screamed, ‘No!” The man did not know what to do with me, but he should have. He told me I had the flu. He sent me home on pain medication. That was it.
I was afraid to take the medication for fear it would hurt the babies. Out of desperation, I took two pills on the way home. I felt only drowsy, the pain continued. As the week went on, I stopped taking the pills. My fear was just too strong. I was also getting increasingly nauseous. By Friday, I began the medication in the morning. But, by the afternoon, the nausea was out of control.
Just one week after hearing the best news of my life, I was dry heaving every 3 minutes and I could not stop. My doctor told me over the phone, “It is time to come into the hospital.” I could not fight that idea anymore. I gave up, and we went.
On the drive, I felt almost happy. I was relieved that we were finally going in. I told myself, “This must be what it feels like to take that drive to the hospital to deliver your babies.” Steve drove cautiously slow. With each bump of the road, I cringed in pain. In looking back. I only had one day. One day of joy, completeness, feeling chosen and blessed. I only had one day.
At the hospital, they gave me more medication. Demerol did not even make a bit of difference. My OB came
in and said, “It is at times like these, when I do not know what is wrong, that I need to send you to a high risk doctor.” The ultrasound was the next morning.
The ultrasound began. It lasted close to 4 hours. How I laid on that table for that long, I do not know. I kept begging the doctor, “Please, please tell me is there something wrong with my babies!” He would not answer. His only reply was, “After, after. In my office.” His face was blank. He pierced at the screen.
In his office he told us, “You have twin to twin transfusion syndrome. It does not look good for one of your babies and probably both.” I said, “Twin to twin what?” I had never heard of it before. I instantly succumbed to shock. He started talking. The room began to get cloudy as if a fog machine was turned on. I turned to look out the window. It was a beautiful sunny day. But, I would no longer ever be the same person again. He spoke, but I could barely hear him or see him. I only managed to hear the words; “There is nothing that can be done.”
I also learned that the pain I had was from a large fibroid tumor in my uterus. It was on the left side. As my uterus grew in the next week, the pain would subside. The diagnosis, however, remained.
We spent that night in the hospital in devastation. Everyone was whispering around us. We were nothing but gossip amongst the nurses on my floor. The next day, we demanded a consultation with our OB and the high-risk perinatologist. There was no plan for our babies. We felt there must be something that could be done. The perinatologist told us without compassion, “Look, I have a whole stack of medical articles on the floor in my office, but none of them are going to help you.” They took away our ability to try, our option to try, our right to try.
They had told us that some people are trying amniocenteses, but added, “We don’t think it works.” They knew about laser surgery by Dr. De Lia, but chose not to tell us. We were robbed.
I was 18 weeks pregnant. I had already been on bed rest since 8 weeks into my pregnancy from hyperemises, severe vomiting. I had lost over 20 pounds, suffered the pain of a fibroid tumor, and diagnosis with twin to twin transfusion syndrome. I refused to accept what they were telling me. I was going to fight. But, there was no Internet. There was no parent to call for support and guidance. There were no second opinions. There was only me, in a house, in a room, in a bed looking out the window as the seasons changed. I would look up into the sky. The trees were my friends.
I was not seen for another ultrasound for 4 weeks. At 22 weeks, there had not been much change. My babies were 30% different in size and my little one was stuck without fluid. His Doppler had no end diastolic flow. At a previous appointment, somehow I saw on my chart the word ‘Male”. I kept this to myself. During all the time alone, I named my boys. I named my donor baby Steven James, after my husband. My husband is the most selfless person in the world, just like his son. I named my recipient baby Matthew Steven, gift from God. We already had the closest relationship one could. I would talk with them, sing to them, and pray for them. I would sleep with their ultrasound pictures, stare at the picture of our new house we were waiting to close on, and dream of Christmas when the nightmare would be over. I would dream of my boys at the top of the stairs Christmas morning in their matching sleepers anxious to come down to open presents. I would dream, hope, and pray all day and all night. All I had was time. Time was moving too slowly. I had no idea what yet was in store for us.
My next ultrasound was at 26 weeks on a Thursday. We were getting so close to our goal of 28 weeks. We had moved into our new house. I was living in the dining room. It was a logical place to be, right next to the kitchen, near a bathroom and on the first floor. There was a door out to a porch so the fresh air could come in.
A woman had come to visit to welcome us to Bay Village, not realizing that I knew every niche in all the sidewalks from end to end of the seven-mile stretch of the city. Once she was there, I wanted her to leave. I had been swaying back and forth from the importance of monitoring movements to pre-term labor. I had never been pregnant before and did not understand what I was to be looking for. I suddenly changed from pre-term labor worries to how many movements in an hour is a baby supposed to move. I just wanted her to leave and she finally did. An out of state friend called me, and I had the same panic to hang up the phone. There was no concentration within me but for the movements of my babies. I felt numb.
I had called my OB and specifically asked, “How many times in an hour is a baby supposed to move?” The woman was rattled with a lack of words. She told me to chart the movements for each baby and bring it to the appointment on Thursday. These words were foreign to me. Was I supposed to get graph paper and make a chart? Why was it so complicated? Why was it all upon me? It was their job to monitor my babies not mine. The pressure was monumental and unbearable.
Tuesday night, I was up in the night to use the restroom. This is always when Steven would make himself known. He loved the night. He got that from his mommy. As I slowly got out of bed, I walked to the bathroom. I had had panic all day. I could not get comfortable. I could not turn from my left to my right side. I felt tremendous pressure like a ballon filled to the max with so much air it was about to burst. I got into the bathroom and sat down, my left hand never leaving my left side. I was always ‘holding Steven”. It was then that I felt the most profound kick, strong, determined and isolated. I knew it wasn’t good-bye, only “I love you mommy.”
Thursday finally came. At my OB’s, he told me he heard heartbeats at the same rate. He heard my heart rate, but only one other. He wanted me to get an ultrasound that afternoon at two to get both heartbeats. He said he was not sure what he was hearing. I walked out of the exam room; I got a glimpse of his woman partner in tears. Nothing was said to me. I went immediately into the bathroom still holding this yellow legal pad piece of paper with ‘x’ marks in two columns. I was crying so hard I got black ink all over me. “What am I supposed to do with this stupid piece of paper!” I bent over crying. The doctor said to go home, have some lunch. The entire time I continued to seek Steven. “Please Steven, it is mommy, just one more kick, PLEASE! I love you so much, Please Steven Please!”
I laid on the ultrasound table, yet again. My fingers were crossed on both hands and my feet were crossed. This was only the beginning of severe superstition, depression, and obsessive-compulsive problems. I turned to the screen, just like the happiest day of my life months earlier. This time, I only saw one baby. It was Matthew, my recipient baby. There was his heart. It was beating. Then, they slowly moved the monitor to my left side, just like the happiest day of my life, when I knew we would hear my second baby’s heartbeat. But today, he moved the monitor over
to Steven. The waiting seems like eternity. The silence literally was killing me. Without turning to look at me, just peering at the screen, quot;I am sorry honey, his heart isn’t beating anymore.”
I became hysterical. They could not keep me down. I cried, “Maybe his heart will beat again”. “No honey….no.” And, he shook his head.”
My Grandpa Joe’s image was with me. I was a child, telling my grandmother on her couch, the Friday after Easter as the ambulance drove away in the middle of the night, “Maybe his heart will beat again? Maybe he will rise like Jesus in 3 days?” The Friday after Easter since a child, since that day, I have always called, ‘Bad Friday”. I cried as I begged it to be me instead. I had had a good life. I had all the firsts…starting to walk, my first birthday, riding my bike, Christmas and so much more. I would have given my life in a second. I still would today. It should have been me. It should have been no one.
In agony, Steve and I waited until the ultrasound was finished. I rushed to the bathroom, walking right past my OB who had come to confirm his suspicions, and fell to the floor crying. As I walked back down the corridor bumping side to side into each wall. I sat, again, by the window in the perinatologist’s office. This time, I did not one single thing he said. My beautiful baby boy had passed away. At that moment, I had too.
How could it be a sunny day again? How could the world not even take notice? My life was over, I was gone. Steven and I cried all the way to the car. We sat in that car in the parking garage for hours unable to move. We were paralyzed with grief and fear.
Two days later, I went into pre-term labor. It happened 4 times during the next 10 weeks. We were terrorized by the thought that when Steven passed away, bleeding through their connecting blood vessels in the placenta could have caused Matthew to go into shock. He could be killed, I could be killed, or he could be neurologically damaged. After they got my first episode of labor under control, they brought a faulty monitor into my room to hear Matthew’s heartbeat. The nurse could not get a heart beat. I looked at Steve across the room with that same alarm knowing it had happened again, Matthew passed away. For the first time in the pregnancy, I became a tyrant. “Get the doctor in hear NOW, go get a doctor, tell me what is going on NOW!”
A perinatologist came into the room. He was my doctor’s partner. He fooled with the machine and then said, “Get another one.” The nurse came in with a second machine and we heard Matthew. I cried and I curled up in the bed. Before I knew it, the doctor was gone. I told Steve, “Hurry, go find him, ask him what just happened!” This was the doctor’s reply. “You are going to have to stop thinking about death or you will end up in a psychiatrist’s office, I have seen it happen before. Do you really want your wife staring out the window for the rest of her life?”
This doctor destroyed much of Steve and my life. He stole from us years of being close and getting the help that we needed. He made us feel there was something wrong with us because we had the emotions and feelings we did. We just lost our son 2 days earlier and thought we had just lost our second son. They also brought that faulty monitor into my room three more times during that hospital stay. The entire experience with our doctors and nurses from diagnosis through delivery was appalling and shameful. What he should have said is, “I am so deeply sorry. Let me bring someone in to talk with you, comfort you, help you.” There was absolutely nothing. That remained unchanged until the birth of my babies 10 weeks later by c-section.
The attitude fluent amongst everyone around us was to be grateful for the baby we had. Concentrate on the ‘other baby’ they said. This too was horrible. It only added to the feeling that we were not supposed to grieve and that it was not OK to cry. All of this at the same time that the status of being pregnant with twins was taken away. Every single appointment, and I went in two times a week now, had to be a new explanation to a nurse of why I was there. Repeatedly, I had to tell them what happened to Steven. They should have known. There was never a compassionate reply after the story was told. Not once. The message constantly given to us was, “You have got to concentrate on the other baby, you have to be strong for the other baby.” This was the worst advice to give. Grief overtakes all emotions. You don’t have to be strong for the other baby, you already are strong. That is a given. You don’t have to ‘try’. It is OK to cry. It is OK to lock yourself in your bedroom and cry for weeks. It is better to be open with your feelings. Doing so will not hurt the second baby. That baby is grieving too.
Now, I was trapped with feelings I was told I could not feel. I was pressured to think only about one baby when I was pregnant with two. I had to continue the bed rest this time in a different room of my house. Just one more attempt for others to try and erase the months I spent in the dining room, to try to take away the deep sorrow and reminders. But, did they not stop to think that Steven was still inside me. At 2 pounds, do they think he would still not find a way to say, “I am still here!”?
Every time Matthew would move, so would Steven. I would still feel Steven move. It took me years to be able to put into words what I felt at these times. It was like Steven was in a car that was on fire or drowning in the water. I could see him and he was banging on the windows, “Mommy, mommy HELP ME!!” I was running and running and running to him, but could never get close enough to him….but, I had to watch.”
This is what I felt every time I would feel him. This is what I felt every time I saw him on ultrasound for the next 10 weeks. This is what I felt all the time, but there were no words. There were no words, there were no people around, nor was it made permissible if there were to say them or share them.
The delivery was never spoken about or planned for. I was convinced that I was not going to survive the delivery. I came very close to writing letters to all my family and friends. Superstition had sucked me in. I would not eat the food I ate when Steven was alive because I thought it would kill Matthew. I slowly stopped watching TV because all the commercials had to do with babies. At my last ability to watch, it was the Home Shopping Network with one hand over part of my eyes so I would not be able to see their ‘Countdown to Christmas” in the top right corner of the screen. Christmas was what I lived for, the time the nightmare would be over, the time when my babies would be in my arms. I never gave up on them, once. As I said, my soul went out the window the day they told us Steven passed away, September 28, 1989. I watched this program until he spoke of his wife giving birth. Then, I never watched again. I could only look at clothing magazines and spent every single waking hour monitoring Matthew’s movements with a clicker my mom gave me from the hospital where she worked. Matthew would move, I would click. A
t the end of the hour, I would write down the number. Sometimes, I did not know if it was the clicking of the clock on the wall, or my clicking that I heard. It was all a blur.
When my husband would come home from work, his brand new job that brought us to Cleveland, he would make me dinner, rub my feet, and tell me animal stories. I would say over and over, “Superstition does not exist, right?” He would say, “No, it is not true, it does not exist.” I would say, “He is OK, right?” Steve would say, “He is OK.” If Steve said it, it would be true. But, he had to say it a lot. And, this is all we said to each other. It would get dark early because winter was coming, and we would go to bed. I would drift off to the sound of clicking.
We went in at 34 weeks for an amnio to check for lung development for Matthew. The night before, Steve and I filled with love for Steven, gathered gifts for him thinking we were going to see him the next day. To get through my bed rest before September 28, I had needlepointed on my side, Christmas ornaments and two baby bibs. I worked that night in a panic to finished Steven’s. I was crying because I did not have the right color thread, but I did it. I had been given matching knitted booties for them, so took out a pair for Steven. Then, years before I ever got pregnant, I have bought pictures of Jesus hugging a lamb. I bought one for each of my future children and for Steve and I. So, along with our Eternal love, we had an ornament of Rudolph, a baby bib, a pair of booties and the picture of Jesus and the lamb. Steve put them in a bag in his car.
The amnio came back negative. The news was devastating. I had gone into labor for the third time. Since 26 weeks, I was taking medication every 2 hours, 24 hours a day to stop the contractions. That was also part of the problem to my severe depression, having to set an alarm clock every 2 hours. The two occasions that I overslept were major emotional catastrophes.
We had to go 10 more days. Matthew was doing very well. My mother brought over the cradle she had as a baby and I told her to put it away. If I touched it, I know I would kill Matthew. I felt I had killed Steven and I was going to kill Matthew. Something I would do, I was convinced, would end his life. It was not about trying to protect myself from the devastation of Matthew passing away and trying not to get attached to him by buying clothes and the setting up the cradle. I was attached to both of them the instant I saw the double line on the pregnancy test. This was actually about the fact that if I touched the clothes meant for him or touched the cradle; my actions would kill Matthew as they must have killed Steven.
10 days went by. It could have been 10 years if you went by how it felt. The amnio was done and the result came in the afternoon at 3PM by phone. Steve answered the phone and then he screamed in joy. Today, December 7, 1989 would be the day.
I took a shower and rushed to get dressed. We were happy but truly paralyzed in shock. They would not let my mother in to be with me. My emotions were contradicting. As they prepared me for surgery, I wanted her there. I needed her there. They should have done anything for me that I asked. I should have known that the delivery would not be any more compassionate then the prior pregnancy, which had none.
Time had been my enemy, going so slowly with the speed to allow the syndrome to progress to kill my son Steven. Then time continued to be my enemy as Matthew struggled to survive. With a needle in my back to numb me for the c-section, time showed it’s evil again by reversing it’s speed. Now, it would rob me of the ability to make decisions quickly. But, in reality, the evil was not the time, but the disease and the lack of desire to try and save my babies from the doctors. It only felt like time was against me, but Satan just added that deception for me while he influenced the disease to flourish and the doctors to withdrawal.
A whole room of people yelled for me to hurry and lay down after the shot. The anesthesia would work within a couple minutes and I was physically paralyzed from my chest down. They tied my hands in ropes and I begged them not to. So many memories of my childhood raced back to my mind in this whole experience. I was reminded of getting my tonsils out at the age of about seven and being tied to the table. I begged them to take them off me. God was in the room, because they did.
Within minutes, at 6:10PM, Matthew Steven was born into a room filled with clapping and laughter. They put him in a bassinet next to me. I saw a beautiful, blonde curly haired baby boy and I was in awe. I could not believe that was my son. Then, at 6:15 PM, Steven James was born into a room filled with a stark silence, I cried for him, while “Only the Good Die Young” played on the radio. Why that radio was on in the first place sickens me.
They brought him into the recovery room. The nurse held him and told me it was OK to scream. That is all she said. Now, along with my body, I was paralyzed emotionally. I stared at her, but nothing could come out. I could not move. I could not talk. I just wanted her to go away and leave me with my son. Then, she just walked away with him. The doctor’s were rude and disruptive telling us, “The morgue is here, the morgue is here.” They wanted us to fill out paper work for Steven and ‘rap things up quickly’. Not once were any of these details discussed. We had 10 weeks to talk about them, make these kinds of decisions. The delivery could have been compassionate, respecting the birth of both of my twins and honoring them both.
I did not feel joy for Matthew, only relief. It was finally over. I was off the hook. I was not responsible anymore. It never should have been my responsibility though. Where were the doctors? Where were the social workers, the psychiatrists, and any caregivers that cared? Why did they forget why they entered there profession? All I know is that they had, they had forgotten. They may have never had those intentions of truly helping another human been and saving life to begin with.
They put me in a room with another new mother who was breastfeeding her baby. The moment I saw her and saw how happy she was, I knew something was wrong. I was so emotionally gone, that I knew something was wrong, but I did not know what. I turned to Steve and said, “I need to see him again, and I want my own room.” I remember him taking me seriously and immediately said, “OK,” standing up, being the best husband and father in the world and went to make that happen. Because of him, I got to see my son and kiss every part of him.
They brought Steven into our room, but they never brought Matthew in. It was always one baby in, one baby out which only added to my mental confusion. I deserved a lifetime with my babies. I at least deserved to see and hold them together as my twins, my beautiful baby boys that I had dreamed of my whole life. Just another horrific mistake made by unfeeling people.
We only had a Polaroid camera. I have six pictures. I touched and kissed every part of him. I held
him and closed my eyes. I told him that I would always love him forever, eternal. I made a promise to him and Matthew that they would be known and remembered and I would find the answers. I never said good-bye, only I love you. Just like Steven that brisk September night.
December 7, 1989, two little babies were born. Matthew Steven and Steven James. Because of these two little boys, the fight against twin to twin transfusion syndrome began. The Twin to Twin Transfusion Syndrome Foundation began. A promise kept.
Mommy, Founder and President
In the year following my delivery, I came to learn of laser surgery by Dr. De Lia. Dr. De Lia is the pioneer of laser surgery and began his research in 1983. I went to see my OB because I had researched TTTS on my own and needed to be told that my twins are identical. I needed confirmation that all the pieces of the puzzle I had acquired could be put together with this conclusion. I brought a tape recorder with me to have those words put on tape. This was something Matthew deserved.
This appointment was not easy for me. In fact, it was one of the most difficult and scary experiences of my life. I spent over 3 hours in his office as my entire body shook with nerves. But, I had to stand up for Matthew and Steven. Maybe I was just a fleeting moment in the lives of my doctors, but to us, this was our lives and our lives without Steven. I wasn’t going to just let that happen.
His response to everything I said was, “I don’t know.” And, “I don’t remember.” He went on to say, “There is nobody quite like you, Mary” in a degrading tone. I began to speak about laser surgery and he quickly replied, “How did you learn about that?” I said, “You mean you knew about it, but you didn’t tell me!”? He said, “I don’t have to tell you about something experimental.” I said, “That’s illegal.” He said, “No, it’s not.” Then, I said, “Then, it is highly unethical.” He looked right at me and said, “If another woman walked in my office tomorrow with twin to twin transfusion syndrome, I would not tell her either.”
I was filled with disgust. This man allowed the syndrome to simply take my son away. He did nothing to stop it. He took my son. He took my daughter-in law. He took my grandchildren. He took generations, and he did not even hesitate one bit for he would do it again the next day with someone else. This type of behavior still exists today. Do not fall into the lie.
It took 10 years after this meeting for another woman in Cleveland to go on to have laser surgery. Nothing had changed with this treatment in those 10 years but the doctor’s opinions of it. My son would be here today if only I had known what to do. For the rest of my life I will fight this evil disease and I will reveal the lies and deceit much of the medical community displays when it comes to twin to twin transfusion syndrome. Do not let yourself be sucked into them. Your babies can make it. They are normal and healthy. You have to fight for them both. Do not give up. You deserve the right to try. I am giving it to you.
411 Longbeach Parkway, Bay Village, Ohio 44140 USA | 800-815-9211 | www.tttsfoundation.org