After believing for much of my life that I would not be able to get pregnant without medical support I found myself pregnant and newly single in March 2010 at 42 years old. And then I learned I was carrying twins in May with my first ultra sound at 14 weeks. Identical twins no less! I was told immediately that they were Mo/Di twins because the ultra sound tech could see that they shared one placenta with a dividing membrane. I was going to have two little boys or two little girls and was thrilled and terrified. I was going to be a single mom with twins??? I didn’t know how it would all happen but I believed that the three of us would figure it out. I remember reading all the information I could get on multiples and the challenges twins could face in utero. I was beginning to understand that carrying twins could cause a number of challenges for both mother and babies.
I got two more ultra sounds before the BIG 20 week ultra sound with all the measurements of the babies and to find out the gender. The ultra sound went well and the babies were not shy at all. They let me know very clearly that they were boys. They were measuring just a day apart in size. I thought it was all perfect until the supervising OB/GYN came into the room to let me know that the boys were showing a difference in the amount of their amniotic fluid. Baby A had 8cm and baby B had 3cm. And then she said the words – Twin to Twin Transfusion Syndrome. The difference in their amniotic fluid was not enough to warrant a TTTS diagnosis but it was something that would need to be watched for. I was scheduled to travel to Portland to see some friends a couple of days later – a flight booked long ago – and I asked the doctor if it was safe for me to fly. I will never forget her response “Well, if you miscarry you will do it whether or not you are here or there so I say enjoy yourself and see your friends.” She then ended with advising me that I needed to be seen by a MFM for monitoring and that I could change to her practice or find another high risk OB to see. I will always be grateful for her knowing about TTTS, seeing the possible signs and advising me of the possibilities but I knew after her miscarry comment I would never be seeing her again. I left the appointment heart heavy and terrified, knowing I had to do more research on what this Twin to Twin Transfusion was and what it meant to me and my babies. I am thankful that my mom came with me to the appointment because I don’t know if I would have been able to drive home safely. I cancelled my trip to Portland.
I came home and googled TTTS. I found the TTTS Foundation and emailed them. I let them know that what I had just learned and gave them the details. The response I received was that I did not have TTTS and to see a specialist. I contacted one of the largest perinatologist’s offices in the city and made an appointment with them the next day. I sat down with Dr Elliott and discussed TTTS fully. He did not tell me anything I did not find on the internet myself but it was good to talk to someone. He was kind and thorough during our meeting. Dr Elliott was the doctor who pioneered the amnioreduction procedure to alleviate the difference in amniotic fluid between the babies to try to help keep TTTS at bay. His introduction of the procedure to TTTS helped to raise the survivor rate from 10% to about 60%, still not great, but better. We discussed the laser surgery that was the best option for treatment for many cases but he also confirmed that I did not have TTTS yet. He recommended routine ultra sound monitoring, twice a week, so that if anything changed it would be caught early. I felt I was in capable hands.
After my appointment I knew it was time to name my boys. I sat at my computer looking up all the baby name websites. I knew their middle names before I knew their first names, Michael and Gabriel after the two archangels. I don’t really remember how it happened but somehow I got to Nolan and Eli. I felt like my boys guided me along in naming them. It was like they already knew their names and were just waiting for me to figure it out because as soon as I decided, I knew I was right. And so they were. Baby A was named Nolan Gabriel (Champion, Messenger of God) and baby B was named Eli Michael (Ascended, Right Hand of God). I carried Nolan on my left side and Eli was high right, often under my rib cage.
I started upping my caloric and protein intake and taking it easy. I quit my part time job so that I wouldn’t be on my feet as much and cut back the amount of hours I was seeing clients. I took breaks and napped every day, doing everything I could to help stop any signs of TTTS in it’s tracks. It was during this time also that I started daily meditations and visualizations. I would go into a deep meditation and see my sons with me. We often held hands in a circle of three as I visualized healing. The connections grew between us. I called us the Three Musketeers. Those moments of quiet and connection were beautiful, healing and calming to me.
I had my twice weekly appointments for about 10 days until the fluid levels changed enough to warrant a TTTS diagnosis. I was immediately sent to the hospital so that whatever medical intervention was needed could be done. I was still at early stage 1 for TTTS so I decided with my doctors to try the amnioreduction as a first line of defense. I was admitted in to the hospital and my amnioreduction was done that night. I had a team of 5 in the room as they drained out 2.5 liters of fluid from Nolan’s sac. They had to go in at a strange angle due to the fact that I had an anterior placenta and the placement of the dividing membrane. It was a little uncomfortable but all went well. After an ultra sound that morning, I was released the next day and my mom drove me home. That was a Tuesday. On Friday when I went back for my second ultra sound that week. We found that the fluid was even more unbalanced and Eli, baby B – donor, was left with less than one centimeter of fluid and Nolan’s sac was up to 12cm and there was no sign of a bladder for Eli. Not good news.
The doctor again immediately sent me back to the hospital so that I could review with the more experienced doctors what my next step would be. This time I knew it was time for surgery. I met with the Associate Director of OB/GYN residency, Dr Clewell, at the hospital and discussed our surgical options. There was no one in the state who offered the laser surgery needed for TTTS so I would need to travel to Los Angeles or Houston. The doctor was friends with one of the surgeons in Houston, Dr Moise. He contacted him first. It was late afternoon in Phoenix and early evening in Houston. He couldn’t get a hold of him at his office so he called him at home. Dr Clewell discussed my case in my room, on his cell phone, with Dr Moise in his home office. He faxed over my records and it was agreed upon that I would be seen in Houston for a consult on Monday morning and would have surgery on Tuesday. That left me about 36 hours to find the money to buy a round trip ticket for my mother and I to travel to Houston and to cover the hotel expense of 4-5 days in Houston. Since I had now been diagnosed with TTTS, I contacted the TTTS Foundation again to see if they had any support to offer, financial or otherwise. I never heard back. But with the help of my amazing family and friends, my mom and I were on a plane to Houston on Sunday afternoon so we could be at the appointment on time on Monday. I was terrified.
We got to Houston, checked into the hotel the surgical team had recommended to us and I got no sleep that night. Bright and early next morning we went to the appointment, the first thing was a 2 hour ultra sound. I’d had a couple of these already in the past couple of weeks but they never got any easier or any less painful. The ultra sound tech was great. The nurse Karen Moise and Dr Moise both came in during the ultra sound. Eli was shrink wrapped to my uterus and without a visible bladder. The blood flow through his umbilical cord was not as strong as it had been in the past but still looked ok. Nolan’s fluid was a little bit higher than it had been and his heart was showing signs of enlarging. Eli about 10 days behind Nolan in size.
After the ultra sound my mom and I went into the conference room with a number of people. I honestly only remember Dr Moise but I know others were there. And he talked. He walked me through everything I knew about TTTS, the surgery, the statistics and I listened, swimming in fear. Dr Moise confirmed that surgery was the best option for us and I agreed. It was scheduled for early the next morning. Which was just as well because I wasn’t going to sleep again so I might as well get up and go early.
Somehow that night passed and I was checking in and getting prepped for my surgery. Before I went under I remember telling my boys I loved them because I didn’t know if I would wake up to both still being alive after the surgery. I remember going in and out of consciousness during the surgery and sometimes hearing the staff in the operating room talking. At the end I started throwing up along with having contractions so the anesthesiologist had to give me some strong medication to stop both. I woke up sore and with an evil headache from the extra medication at the end of the surgery but the surgery went well and the boys were doing great. Seven connections were severed. They gave me morphine to help the pain and I floated off into nothingness. I spent that day and night in the hospital under the watchful eye of the nurses. The ultra sound next morning confirmed that I had two little boys still doing beautifully so I was released back to the hotel and was advised to stay there for another 36 hours before I flew back home.
Once home I put myself on bed rest. I went from bed to bathroom to couch to bed. Other than the weekly trips to the doctor that is all I did. Thankfully my mom was able to stay with me. I don’t know how I could have done bed rest while living alone. Every appointment with my MFM went great. The boys looked wonderful. Their fluids had balanced out and Nolan’s heart seemed to be healing. Eli’s bladder looked great and he was doing a great job with catching up in size with his brother. I finally began to breathe again as I could feel both boys move. Eli still liked to hide up under my rib cage but to finally feel him move and kick too was a blessing.
My last pregnant picture – 25 weeks
Then, on the morning of 26 weeks gestation I was laying in bed and felt a “pop”. I quickly go up knowing something was wrong and I felt fluid running down my legs. I got to the bathroom as quickly as possible and then I gushed clear fluid. My water had broken. All I could was repeat over and over again “No! No! NO! It’s too soon. It’s too soon. NO!” As soon as the fluid stopped I cleaned myself up, called the nurse, got dressed and drove myself to the hospital. They got me in to the L&D triage, tested to make sure that my water had broken and did an ultra sound. The boys looked okay and my cervix was strong. It was Nolan’s sac that had ruptured. They had gone through his sac for the surgery. The doctor came in to tell me they were admitting me, putting me on magnesium sulfate to help stop the contractions that I would receive steroid shots to help the boys’ lungs mature. I was going to be in the hospital until I gave birth. They said that the first 48 hours were critical. If we could hold off birth for 48 hours I might be in the hospital for awhile. That was my goal.
They started me on the magnesium and three different types of antibiotics just in case it was an infection that caused the rupture. Those first 48 hours were a daze. The magnesium had some strong side effects; I couldn’t focus, everything tasted like cardboard and at the very end it was so bad I could not even get out of bed. I wore a fetal monitor 24/7 and made sure to keep the volume up loud enough that I could hear both heart beats. It felt like I looked at that monitor every couple of minutes just to make sure I still had two alive babies. My cervix never changed and the contractions stopped so they moved me to another area of the hospital for my, hopefully long, hospital bed rest stay.
My hospital bed rest was quiet. I chose not to have many visitors, other than my mom, and that choice upset some of my family. I just did not have the energy to be strong for them or allow myself to be weak and then have to pick myself up again. My time was spent staring at the TV, talking on the phone and spending time with my boys, talking with them, strengthening our connection. I practiced calming breathing, visualization, mediation and prayer. Both the boys and I did a lot of weight gain during this time. Then eight days into my bed rest the contractions started again. My doctors moved me back in to L&D for another round of magnesium sulfate, this time as a neuroprotector against Cerebral Palsy. I had no signs of infection and my cervix was unchanged but they believed I would be giving birth soon.
I spent another 48 hours on magnesium and this time the side effects were worse than before but it didn’t matter. The doctors told me that every day in the womb was equal to three days in the NICU. So bring it magnesium, I was up for the fight. As soon as they stopped the magnesium the contractions started again. And by 1:40am on September 4, 2010 I was being wheeled in for an emergency c-section. It was like a scene from any hospital drama you can think of. I had three nurses running with me to the OR and one nurse sitting on my bed helping to prep me for the surgery. I began to shake in shock and fear. Nolan’s heart rate had been dropping to 50 and not bouncing back so it was time to have babies at 27+2 weeks.
Nolan was born at 1:55am and Eli at 2:00am. They were both 2lbs4oz and 14inches long. I am so thankful that the neonatologist I had spoken with let me know not to expect to hear them cry at birth. Had he not told me that I would have been terrified at the double silent delivery. There were 2 NICU teams in the delivery room. They worked with the boys and got them ready for the ride down the hallway to the NICU. My first view of my boys were through their isolette as the wheeled them by me on their way out. They were beautiful! We had survived TTTS! At this point I did not know that Nolan had been born blue with very low APGAR scores. They had to intubate him and work with him to get a response. Eli had CPAP breathing support and better APGAR scores. My mom went with them to the NICU as I was closed up from the surgery. A couple hours later I got to see my boys as they wheeled me down the NICU hall in my bed. Each boy had their own room right next to each other. The neonatologists told me that they looked good and were doing well. I was exhausted and thrilled!
Nolan Gabriel Eli Michael
This should be where my TTTS story ends but unfortunately it does not. I later learned that after the surgery, we had also experienced the TAPS form of TTTS. This left my previous recipient, Nolan, anemic and my previous donor, Eli, polycythemic. For the next nine days I was like any other mother with twins in the NICU; working on pumping, healing from my c-section and splitting my time between the cares and feeding of my two miracles. I was able to start kangaroo care with Eli at three days old and Nolan at four days old. They had jaundice, episodes of apnea and bradycardia and were tube fed donor breast milk until my milk came in. Then at nine days old Eli was hit with the digestive infection NEC, Necrotizing enterocolitis. Thirty six hours later he died in my arms. The cause of death as listed on Eli’s death certificate was complete cardiac failure, due to NEC, due to prematurity, due to TTTS. I believe that the heroic work of our medical teams in Phoenix and Houston gave Eli a chance to grow and gave me the opportunity to get to know him, care for him and hold him in my arms. But in the end he was just not as physically strong or developed as his brother and was unable to fight the overwhelming challenges of his birth.
Eli’s death was debilitating to me. I was shocked, confused, overwhelmed and crushed. After I gave birth to my survivors, I truly thought the Three Musketeers would make it, together. The intermingling of grief and pain with the experience of joy and gratitude was disconcerting and difficult to manage as I celebrated two births and one death all at the same time. The pain of the death of my son tore me apart like an explosion. In the beginning that explosion repeated with every single breath I took. As time went on there was more space and more time between the pain. Two and half years later the pain still steals my breath from my body in an instant but it doesn’t happen as often now. They say that a mother never gets over the death of her child, I believe that could be true. I had to go back to work, part time, two weeks after Eli’s death but the rest of my time was spent in the NICU. I slept, ate and lived there until Nolan came home 55 days later. Thankfully he had “quiet” NICU stay and graduated at 66 days old. He was around 36 weeks gestation and weighed over 6lbs when he came home.
Nolan is now 2.5 years old. In his first year he also overcame milk allergies, disorganized swallowing, anemia and a heart murmur, apnea events through to 7 months old and surgery with a 3 day hospital stay at 5 months old to correct his sagittal synostosis. He now receives speech therapy and occupational therapy to help improve his communication and to help with his sensory issues. Most recently in December 2012 he was diagnosed as at risk for Autism. I am still a single mom and am amazed every day by this beautiful, happy and determined little boy and humbled by the love I have for both of my miracles. Both of my boys have changed my life in ways I never thought possible.
My survivor Nolan
As a result of my TTTS journey I became an admin to a wonderful facebook page for TTTS grief support. I also co-founded the TTTS Support Team to support other parents who have faced the loss of their child(ren) from Twin to Twin Transfusion Syndrome. I started this blog in 2013 in hopes of uniting parents, creating a community of support and to build awareness through our stories so that we can fight this syndrome together. I also have a personal blog if you would like to know more about me and my boys.
All of this I do in honor of my survivor, Nolan Gabriel, and in memory of my angel, Eli Michael.
The only picture I have of the three of us together.