Monochorionic Monozygotic Twin Pregnancy

Though my story may seem common with many people who also have dealt with difficult pregnancies, my story will remind you that miracles do exist and that with love, faith, and courage, anything truly is possible. It is a story that serves as a reminder that it is okay to depend on someone else to be that rock that keeps you on the ground when times are tough.

I was told “You have a Monochorionic Monozygotic twin pregnancy. There is no membrane in-between the embryos and there is a high chance that they are conjoined. There is only a 50% survival rate and if they do survive, there is a high risk of major complications. You will need a c-section at 32 gestational weeks, if you even make it that far. You will have to go in-patient around 24 weeks until delivery. This is a very difficult pregnancy not suitable for everyone so you should both think about this thoroughly and should you choose to terminate, which I highly recommend, then come back. Otherwise you will need to find a high-risk doctor and hospital.” Those are words we did not expect to hear… words that no parent expects nor ever wants to hear! All of a sudden that feeling of excitement about having another baby, and the added excitement of finding out that it was twins, came crumbling down on us. We were so confused, sad, and angry. What do we do? Why us? As I sat there listening to the doctor, my mind drifted toward thoughts of work. As a labor and delivery nurse, I knew exactly what he was talking about. I remembered learning in class about this type of pregnancy and all the risks, complications, and negative outcomes and I had seen many high-risk pregnancies lead to negative outcomes.

After we had left the doctor’s office, we went to grab something to eat at a nearby restaurant. As I watched my husband call his sisters and friends with such happiness and excitement, I just felt miserable inside. In a way I felt a sense of jealousy towards him and all I kept thinking was “ignorance is bliss”- he had no idea of the long, hard road ahead of us. I had wished that I could be that happy and excited but I felt angry… angry because once again I wouldn’t be able to experience a vaginal delivery. I would not be able to carry my babies’ full term. My entire pregnancy I would have to worry about pre-term complications and an unknown delivery outcome. I felt like I was being robbed of a normal pregnancy. With all of these uncertainties- how would this affect me? How would it affect my husband and our 4-year old daughter? Would we be able to handle all of the potential problems that our babies could have? I have seen so much throughout my years working as a labor and delivery nurse, how could I not assume the worse, and even for just a second only want the easier way out. I had a choice. We had a choice… a choice that I did not want to make on my own. So, I relied on the person I trust the most- my husband.

As we sat there in the restaurant, I nervously asked him, “What should we do?”, He looked at me and said “They have a 50% chance of surviving but if we terminate we will be taking away every chance they have. I know everything will turn out okay because God has never given up on us and he won’t fail us now.” In my heart I knew that he was right. We had already been blessed in so many ways and I had to have faith that this would be another blessing so we then made an appointment with a maternal fetal medicine specialist (MFM) and just buried ourselves searching through information on the internet. The more we read, the scarier it all got. We joined a small community of Mono Mono moms on Facebook which became a great source of information and one of our support systems throughout the whole process. The day came when we met with our MFM. We had a one-hour consultation with the doctor, where she spoke to us about the numerous ultrasounds, doctor appointments, blood tests, potential com-plications, early delivery, and the necessity of a c-section. She recommended to not have a baby shower nor preparing our babies nursery until after delivery due to the uncertainty of this pregnancy. We left the doctor’s office feeling overwhelmed and with mixed emotions as we knew this was going to be a roller coaster ride. Although, feeling prepared for it, we still had no idea what was ahead for us. We felt that since we had a strong relationship and a great support system that we would be able to overcome any obstacle. Regardless of the outcome, we would cope with it together and give our babies whatever they needed.

Here’s what you need to know about Monochorionic Monozygotic twins. This type of pregnancy happens when the fertilized egg splits after the formation of the amniotic sac between days 8-12 of conception (conjoined twins result from division after the 12th day). This occurs in just 1% of twin pregnancies with an estimated occurrence of 1 in 35,000 – 60,000 pregnancies. Due to the late division, the 2 fetuses have to share the same placenta and same amniotic sac and as a result, many complications arise that are unique to this type of pregnancy with major causes of morbidity and mortality such as cord entanglement and compression. Since both babies move around in the same space, their cords can easily become tangled in the other’s which could potentially cut circulation to one or both babies. As the babies get bigger with less space, there is a higher chance the cord got compressed and thus cutting their vital supply of oxygen and food which is why early delivery is necessary. Vaginal deliveries are rare and discouraged due to the life-threatening implications associated with the cords during the birth. Other complications of this pregnancy include those of any other twin pregnancy, which are twin-to-twin transfusion syndrome (TTTS), unequal placental sharing, amniotic fluid discordance, intrauterine growth retardation, and abnormalities in the fetus.

Maternal complications are more prone to develop, such as preeclampsia and gestational diabetes. Many of these com-plications can result in fetal death or cause developmental challenges. Although additional research is needed for this type of twin pregnancy, aggressive monitoring has shown to decrease the risk of fetal death. Knowing there is nothing you can do for your growing babies besides hoping and praying to God that nothing bad happens to them makes you feel helpless and afraid. We’ve lived in fear that at any moment anything can happen and we had no control. One moment you can be looking at the most amazing and unique ultrasounds of your babies hugging and kissing and the next you can hear the most unwanted, devastating news that there are no heartbeats anymore. It seemed that every time we had a doctor’s appointment there was some type of bad news. Every ultrasound felt as if time stood still until we heard those strong heartbeats. So, what do you do? You pray. We placed everything in God’s hands and prayed that everything turned out well and we had our family and friends pray on our behalf. I was advised to stop exercising, no long walks, and minimize stress, and instead to begin taking baby aspirin and folic acid daily along with my prenatal vitamins. In the beginning of the pregnancy, I saw my OB/GYN and MFM once a month because before viability that there was nothing they could do. In the meantime, if I wasn’t at work, I was at home feeling tired, with back and pelvic aches, and vomiting with almost every meal. I remember vomiting one day in my patient’s room because I couldn’t reach the bathroom. I had been to the emergency room (ER) twice for dehydration and had to receive intravenous (IV) fluids. I had lost 12 lbs in the beginning of the pregnancy and only gained a few pounds thereafter as the nausea and vomiting persisted for the entire pregnancy where I was closely monitored for gestational diabetes and preeclampsia. At 14 weeks, my Nuchal test came back abnormal. We were referred for genetic counseling and advised to have an amniocentesis done. Again, they mentioned the option of terminating the pregnancy. My husband and I refused the amniocentesis as it would increase our chances of miscarriage even higher. We placed our trust in God and accepted that however our babies were born, they were meant for us and we will welcome them with open arms.

At around 16 weeks my cervix was found to have slightly shortened. They advised me to stop working, but the longer I remained at work, the longer I would be able to stay at home with the babies. I decided to hold off and continue working for as long as I could. I remember one day when I was 20 weeks pregnant that I had a terrible night at work. It was a very busy evening with no break and as usual I was vomiting everything that had I ate and drank. When I finally reached my home that morning, I felt cramping. I was feeling so exhausted that all I wanted to do was sleep but I had decided to drink a lot of water instead, lay in bed, and wait to see what happened since in 2 days I would have an appointment with the MFM. In a couple of hours, the cramping stopped. When I went to my appointment they had found that my cervix had shortened by a significant amount and therefore I was placed on bed rest and on disability.

Being on bed rest was tough for myself, my husband, our 4-year-old daughter, and everyone around us. I felt it threatened my self-esteem as I could no longer perform my duties as a wife, a mother, and a career woman. My back ached more from lying down and I often found myself cleaning, cooking, and straining myself, which made me feel cramping at times. It also caused tension at home since my husband wanted me to just lay in bed all the time. He didn’t understand how worthless and impotent I felt just lying there.

Aside from working his own long hours, my husband now had more responsibilities at home. Our family and friends stepped up and helped with cleaning, cooking, and caring for our 4-year old. I often worried about my daughter and how this all could potentially impact on her. Seeing her mother sick every day, having to lay in bed most of the time, and not being able to carry her could not have been easy for her and I feared that she would blame it on the babies. Then one day my daughter asked me “Why are the babies making you sick all the time? They are being bad girls to you mommy.”. How could I expect my 4-year old to understand that I made this choice and it was all for a good cause? Recently, at school, she was asked to draw a picture of a time when she felt sad and she drew herself at home and myself pregnant in the hospital. She wrote “I was sad. My mom went to the hospital.”. As a mother, this was heartbreaking. At 20 weeks I began going to the doctor biweekly.

At 23 weeks we had a cardiac ultrasound where we were told ‘Baby A’ had an Echogenic Intracardiac Focus (EIF). As the doctor was explaining this in detail, my mind just went blank and all I could hear was “cardiac condition… associated with Down’s syndrome.”. We were again referred to genetic counseling and advised to have amniocentesis done. We were devastated. Once again we refused the amniocentesis, which appeared to make the doctors very unhappy. One doctor said that we should get tested so that we can make the right decision and terminate the pregnancy if that’s what we chose. Terminate? At 23 weeks!? No way- that was not an option for us! My husband and I decided that it did not matter what the results were, we still would not terminate so we refused the amniocentesis. However, we did agree to a special blood test that was not 100% guaranteed with twin pregnancies. For us, at this point, knowing whether or not our babies had Down syndrome was a matter of preparing ourselves for what was to come. The blood test came back negative, but of course the doctors had to emphasize that it is not a great trusting source and the amniocentesis was a better diagnostic that would give us more accurate results. It turned out that the EIF is nothing to worry about as it resolves on its own usually by the third trimester. EIFs are found in about 3-5% of normal pregnancies and cause no health problems but at 24 weeks, I began to go to the doctor once a week. At 26 weeks, I was going Mondays, Wednesdays, and Fridays for ultrasounds, cervical length exams, and non-stress tests (NSTs). At 26 weeks, I’d received my first steroid shot and met with the neonatologist from the hospital where I would be delivering. At exactly 28 weeks, as planned, I went inpatient and this was a completely different journey in and of itself.

Inpatient stay has been one of the toughest and most challenging experiences of my life. My stay began the day after Thanksgiving where I lived in a small hospital room for 28 days. I had to leave the comfort of my home and just focus on myself and the babies. I was on continuous monitoring and was only allowed off to use the bathroom and for half hour 3 times a day to walk around the unit. Most of my time was spent in a bed or in a chair as I was constricted to this monitor. I kept myself occupied by reading novels, I made my daughter a photo album, and since it was December, I did some online shopping and watched almost every Christmas movie ever made. I am blessed with amazing family and friends who constantly kept me company and delivered me food. Though I often worried about what was going on at home, from a hospital bed mile away, I quickly learned that there was nothing that I could do nor control. It was tough not being able to hold my daughter every day, or to put her to sleep, to read her a bedtime story, or do homework with her. It hurt me not being there for my daughter on her 5th Christmas. I just don’t ever want to miss another special moment in my kids’ lives. I also felt terrible for my husband having to be back and forth between our home and the hospital, all while still having to work and care for our 4-year old daughter.

Two weeks into it with two more weeks to go, I had a breakdown. I was getting tired and very anxious. I hated the bed, the food, and I hated being away from home, from my daughter, and my husband. I then quickly came to the realization that I had a duty and a purpose in life: God had chosen me to carry these two very special little angels. There were two little ones that depended on me to keep healthy in mind and in body so that they too can be healthy and safe. I had a responsibility. Therefore, I decided to make the best of it and continue being the strong and determined women that I am.

One day a nurse asked me, “You have been stuck in this place day and night for weeks, and every morning you have the same smile in your face- how do you do it?”

“Simple”, I replied, “God chose me to be the mother of these special little babies. I am grateful for every day that I am still here because it is one more day they get to grow stronger and be closer to the planned delivery date. Even if that means it is one more day I am stuck in this place.”

As a labor and delivery nurse myself, I felt that the knowledge I carried was both a curse and a blessing. I was able to place myself on the monitor as well as take myself off when allowed. I evaluated the strips and knew when there was a problem (and many times I tried to correct it myself). I knew when I needed a new IV, when my type and screen would expire, when I needed IV fluids, or medicine, and when a doctor was needed at my bedside. I often felt that I did not let the nurses do their job as my husband and the nurses often joked that I should be collecting a paycheck for managing my own care. I tried to be both a patient and a nurse all at the same time. I was blessed with amazing human beings caring for me as the labor and delivery nurses at The Valley Hospital went above and beyond for me. Many of these nurses I will never forget because they made such a great impact in my life. They under-stood me and treated me as both a patient and a nurse. I had received presents from them, therapeutic massages that helped with my stress, and anxiety while sometimes I was even gifted with their presence when they should have been at home with their own families for the holidays. Being on the other side taught me a very valuable lesson: I learned that many times it is the little things that matter the most. That 10 minute conversation with your patient, or a simple gesture such as making their bed, accompanying them when they eat their breakfast or taking a small stroll around the unit, those little things are what matter the most and can make a huge difference in their care. Being in a strange environment, especially in an unwanted one, like a hospital is not easy and as nurses we have the ability to make it less stressful, less overwhelming, less scary, and more satisfying. This experience made me understand why patient satisfaction is so important.

Delivery on December 24th, 2015 at exactly 32 weeks’ gestation, as planned, our two baby girls were delivered via c-section. They truly are our Christmas miracles! Baby A was 3lbs 10oz and Baby B was 4lbs 0.4oz and both born at 12:32 pm, just seconds apart. The doctors said that it was indeed a miracle that the babies didn’t cut off their vital supply of blood and nutrients since they had created a tight knot in their cords. Baby B’s cord was wrapped around Baby A’s cord creating the knot. The doctors were also glad we opted for delivery at 32 weeks and did not wait a single day more.

Just when you think the fight was over, NICU time starts where this fight was no longer mine but of these two premature babies. Since I was in the medical field, my husband not only trusted my judgment but also depended on me to make all of the right decisions. This was my time to be the strong and supportive one. “Baby A”, Sophia Valentina, spent 43 days in NICU. “Baby B”, Isabella Rose, 26 days. However, one week after discharge Isabella had a life-threatening event at home that prompted her a re-admission into the hospital for an additional eight days. Watching two tiny, fragile human beings fight for their lives everyday changes you. What to us is a natural instinct like breathing, swallowing, and maintaining our temperature, to them it was a battle of life or death and seeing them connected to multiple monitors was so heartbreaking. Every day that it got closer to going home, something else happened. If it wasn’t intubation, it was a drop in heart rate, stopped breathing, rectal bleeding, or not tolerating feedings. The strength and determination that premature babies have to survive has taught us as parents, to never give up, no matter what the odds are because miracles do exist. Our babies taught us to be strong and patient. They taught us to never lose hope, because though today might seem cloudy, tomorrow the sun may be shining. Like Julia Toivonen said, “It takes a village to care for a premature baby.” because that is exactly what had happened. An amazing group of doctors and nurses had helped care for our little ones and we are forever grateful for the amazing work from the staff at The Valley Hospital.

Every day I thank God that what started as a terrible nightmare turned into a happy ending as we have truly been blessed with now three beautiful and amazing daughters. Though finally at home, our twins are struggling with severe reflux, laryngeal spasms, difficulty feeding, and milk protein allergies. These we consider “little issues” because we can and will help them through these challenges. This too shall pass. With all that we have been through it really could have been a lot worse. I look at my perfect little babies and I cannot believe that we were once advised to terminate. I feel so immensely blessed for having such a great husband; he gave me the strength I needed to continue with this pregnancy. My husband knew God would not fail us, and He didn’t. Our girls are so lucky to have him as a father and this all has been a journey full of many lessons. I feel that it has made me into a better person, a believer in miracles, and it has strengthened my faith in God as my husband with our children are my biggest inspiration and I will cherish every moment I have with them. I began writing my story to give other “MoMo moms” hope and I hope that my story will give others strength if struggling with a high-risk pregnancy. I hope that if you can’t find the strength within yourself that you find the strength in your loved one- everyone gets a miracle in life, we got ours, and I hope you allow yourself to receive your miracle as well!