After having a very complicated pregnancy with my singleton, I wasn’t sure I wanted to have another baby. Finally, when my son was 5 years old I decided I was ready to try again. I got pregnant within 6 weeks of going off birth control. I was so nauseous and physically ill, as well as unbelievably fatigued that my husband and I joked it had to be twins. Little did we know at the time that it was true.
I decided to switch OBs at 13 weeks because of a feeling I just couldn’t shake. On my first visit with the new OB, he decided to do a bed side ultrasound to confirm my due date. That was when I got the biggest surprise of my life…there were two babies! He scheduled me for an ultrasound later that afternoon to get a better look at the type of twins. During that ultrasound they confirmed it was only one placenta (monochorionic) but couldn’t find a dividing membrane so they thought they shared an amniotic sac as well (monoamniotic). I was then referred to a Maternal Fetal Medicine Specialist (MFM).
My first visit was at 16 weeks with my MFM. They did an ultrasound and confirmed that there was indeed a dividing membrane so we were having monochorionic diamniotic (MoDi) twins. Everything on the ultrasound was perfect. We also found out we were having boys! My MFM went over all the risks of this type of pregnancy, including TTTS. We already had a game plan if TTTS was to occur but he reassured me that there was only a 15% chance of developing it. He also informed me that he does something most MFMs don’t, which is measure the blood flow to the brain. It was called middle cerebral artery peak systolic velocity (MCA-PSV) measurements. He said he did it as a precaution, as a “just in case.”
I was having ultrasounds twice per month (4 hours away round trip) and everything was going perfect. The boys always measured close in size, fluid pockets were within normal limits, bladders and stomachs always visible. The blood flows were always great. So far, a picture perfect identical twin pregnancy.
Fast forward to 25 weeks, I went in for my normal bimonthly ultrasound. All seemed well. I got back home and my MFM called and said there was a discordance in their blood flow to the brain (MCA-PSV). They had a rare form of TTTS called TAPS (twin anemia polycythemia sequence). This meant one baby was getting most of the red blood cells (polycythemia) and the other baby was being deprived of red blood cells (anemia). Normally, TAPS occurs when a laser ablation surgery is done for TTTS and vessels are missed. Ours was spontaneous. The new plan of care was to increase ultrasounds to twice per week, bed rest and Boost protein shakes.
Things were crazy over the next couple of months. Driving 4 hours twice per week with no income because I was on bed rest and my husband was in college added to the stress but we were willing to do anything to make sure our boys had the best possible care. I had so much anxiety in between ultrasounds. The drive there was the worst, I was terrified that only one baby would be alive, or worse neither. Since I had an anterior placenta fetal movements were minimal, which of course only added to the anxiety. At each appointment their MCA-PSVs would be so different. The higher the MCA reading, the more anemic the baby was, the lower the MCA reading, the more polycythemic the baby was. It was incredible (and scary) how often those readings changed. I became obsessed with them. I needed to know what they were. I did a lot of research and asked a lot of questions. I knew what was normal and what wasn’t. I was fixated with them. I thought about them night and day. There were many times I wondered how much further we were going to push our luck. Why we weren’t just delivering?
At one point there was talk of an intrauterine blood transfusion to help my donor baby. I didn’t think that was a good idea because my recipient would end up with even more of the red blood cells. Basically, my donor had blood the consistency of Kool-Aid while my recipient had blood the consistency of Ketchup. I wasn’t willing to risk it.
At 34 weeks, I had to switch my ultrasound days so I could attend my husband’s graduation from college. My mom usually came with to my appointments but since I switched days she had to work. At 34 weeks 5 days, I was driving to my ultrasound by myself when a song came on the radio. It was “With Arms Wide Open” by Creed. I thought to myself “this is a sign; my boys are coming today.”
During my ultrasound I knew things weren’t going that great. I became pretty familiar with the measurements and knew they were bad. The ultrasound tech left the room. She came back about 15 minutes later and said that my MFM wanted to talk to me (he was out of the office that day), I took the phone and he told me I was going to be admitted and deliver. I had two phones in my hand; on one phone was my MFM and on the other phone was my OB (I was seeing my OB regularly during all of this, as well). My OB was from a different hospital but had privileges at the current hospital so he was going to drive there to do my c-section.
I remember being prepped for surgery, I remember my husband being by my side, I remember tears rolling down my face, I remember being so scared, I remember longing to hear my babies’ cries. Then there it was, finally, one little pitiful cry but it was the best sound in the world. Then I waited and waited for what felt like eternity with a million thoughts racing through my mind “where is the other cry, why can’t I hear it, God, what happened?” I remember begging and pleading with God that my other baby was okay. I remember looking at the bright surgical light and singing some of the lyrics to the song I heard on my way to the ultrasound in my head; “With arms wide open, under the sunlight, welcome to this place, I’ll show you everything, with arms wide open. Now everything has changed. I’ll show you love, I’ll show you everything, with arms wide open.” Finally, there it was – the other cry! Then the tears really started flowing. That minute between their births was the longest minute I have ever experienced in my entire life!
I wasn’t able to see the boys for about 4 hours after their birth. They came into this world weighing 5lbs 3oz and 4lbs 3oz. They were being worked on and I couldn’t see them until I was able to stand up to get in a wheelchair. My donor baby needed two blood transfusions and my recipient needed a fluid exchange transfusion and had to be intubated as he was in respiratory distress. He also had blood pressure issues. Those were just the major complications they also had other issues like jaundice, apnea, trouble regulating body temperature, couldn’t coordinate suck, swallow, breathe and other more normal premature baby NICU issues. The neonatologist said that if we had waited any longer to deliver them I would have been lucky to have one survivor let alone two.
Some may call it Luck, some may call it Fate, and some may call it Destiny that both my boys survived but a lot of things played a role in them surviving; switching to a different OB, switching my ultrasound days that week, the people I met during my TTTS journey, but mostly the fact that I had proper management with frequent ultrasounds and an MFM that measured MCA-PSVs as a “just in case”, if he didn’t we wouldn’t have even known about TAPS because that is the only indication. Every other measurement that they monitored was always within normal limits.
Today Ryker (recipient) and Brecken (donor) are 7.5 months old and doing amazing. I thank God every day for not taking them away from me. They are my little miracles and I truly know how lucky we are. Someday I will tell my boys this story and I will always remember how one song forever changed my life…”He can take this life and hold it by the hand and he can greet the world with arms wide open.”