2017 Gilbert Twins
We found out at 7 weeks we were having twins! They told us they were identical because there was only one placenta. Most identical twins have a membrane separating them, but they couldn't’t see that membrane with our twins. They assured us it was there, just very hard to see, because otherwise they would be mono/mono twins (momo twins for short), and they are so rare that there was no way they could be momo twins. However, by 12 weeks this membrane was still missing, and our baby B wasn't’t as big as baby A. We saw an MFM doctor in Evansville at 15 weeks that confirmed we were having very rare momo twins which only occur in 1% of all twin pregnancies. We found out that our babies had a 50% chance of surviving until 24-26 weeks. Then, I would be admitted to the hospital for monitoring until they were born. The absent membrane with momo twins is dangerous because the umbilical cords can tangle and tie in knots, which can kill one or both babies. If one baby dies in utero, there is a very high risk that the other baby will die as well due to the changes that occur. We had to be seen every 2 weeks for ultrasounds because another risk is Twin to Twin Transfusion Syndrome (TTTS).
We had our anatomy scan at 17 weeks. Although we wanted to keep their gender a surprise, we were still very excited to check up on them. However, we quickly realized something was wrong. They said that there looked to be a calcium deposit on Baby A’s heart. They said it should disappear by birth but because it was so large they wanted to do a fetal echo at 22 weeks. Baby B continued to lose ground to baby A.
We got worse news during the fetal echo. We found out that baby A did indeed have a heart defect, not a calcium deposit. Her heart defect is Pulmonary Atresia with Intact Ventricular Septum. They said it would require a series of 3 open heart surgeries after birth to become a “single ventricle,” meaning the baby would only have half a heart. We would be transferred to Indy and I would be admitted there instead of Evansville so that baby A could have surgery there. We were devastated. We thought the dangerous pregnancy was a lot to handle, and now we were going to have to watch one of our tiny babies face more challenges.
At almost 25 weeks we had another scan to look for TTTS at Evansville. Indy wouldn't’t be able to see us until 27 weeks. We received more bad news; there was now a 22% difference in size between baby A and baby B. This is a sign of TTTS, which would require fetal surgery at University of Cincinnati Medical Center. We made the trip to Cincinnati 4 days later.
Our first appointment in Cincinnati was a roller coaster to say the least. While they were doing an ultrasound, we were discussing that I would be admitted to the hospital at 26 weeks, one week away. They wanted us to go to the nearby Children’s hospital for another fetal echo, and then find a hotel to stay in for the week until they admitted me at 26 weeks. About 5 minutes later they came in during the ultrasound and said plans had changed. Baby B was in danger and I was admitted and rushed to the Labor and Delivery floor right away where we were given more information. The blood flow to baby B was intermittently absent, meaning that the baby assn’t constantly getting blood flow. This could hold steady or quickly turn into the baby not receiving any blood flow. Given her size, they were sure baby B would not survive if we didn't’t deliver right away. However, if we delivered we would likely lose baby A due to the heart defect. To further complicate things, the risks of having twins at 25 weeks are extensive and could risk the lives of both babies. The decision was difficult but we requested to wait, get steroids on board, and give each baby the best chance of survival. I remained in the hospital with daily ultrasounds for the next week. We also found out that it wasn’t TTTS, but SIUGR. Baby B was so much smaller because Baby A had a greater portion of the placenta.
At 26 weeks I began continuous monitoring/bed rest to watch for cord compression. Doctors fully expected me to deliver that day, but our miracles hung on until 34 weeks! Most momo twins are delivered at 32 weeks because of the increased risk of cord compression, but due to baby A’s heart we waited until 34. We had a few scares along the way that almost caused early delivery, but they pulled through and made it to our scheduled C-section on December 21, 2015, and we found out they are girls! Kinzie was 4 lbs 11 ounces, and Kylie was 3 lbs. 11 ounces. Kinzie was transferred to Cincinnati Children’s hospital CICU a few blocks away about an hour after birth, while Kylie stayed in the NICU at UC.
To date, Kinzie has had 2 open heart surgeries and 6 heart catheterizations. She will have a 7th heart cath at the end of the year, and at least one more open heart surgery in a couple years. Her left side has been affected from the stroke but she is working so hard to overcome that and k