I wanted to share our story about our obstacles with twin to twin transfusion syndrome. While I was pregnant with our boys it helped me to read about other stories of people that had went through the same thing. Maybe I can help ease another mother’s heart suffering from TTTS. I am going to post my story on a website where I read lots of stories about TTTS. I wanted to post it on my blog as well so that family & friends could understand and be educated on exactly what TTTS is and what we went through during my pregnancy with our identical twin boys. So here we go….
I found out I was pregnant on April fools day hehe. I had my first ultrasound at 8 weeks pregnant. Our doctor confirmed there was one baby with a strong heartbeat. He gave us the option of going to have routine down syndrome testing done. Not everyone wants to do this testing. We opted to have it done so we were sent to a Fetal Medicine Specialist. Around 12 weeks pregnant at our routine down syndrome testing the ultrasound tech found twins. We were in complete shock but very excited! They only found one placenta which is a common sign of identical twins. Our twins shared one placenta but were in their own amniotic sacs which was very good. This is called monochorionic di-amniontic. With sharing a placenta problems can present themselves. One of the main problems is Twin to Twins Transfusion Syndrome or TTTS. Before we left our appointment that day (still in shock I might add) the doctor sat us down and told us about TTTS and how there was a possibility it could develop but not to worry about it yet. Also he said not to go home and Google everything and read about things on the internet. Of course I did not listen.
When you have a multiple pregnancy you see a Fetal Medicine Specialist as well as your OBGYN. Ironically the Fetal Medicine Specialist that found our twins during the routine down syndrome testing turned out to be our specialist. At around 15 weeks pregnant I had another ultrasound and they started to notice fluid discordance. Fluid discordance between each separate amniotic sac is a sign of developing TTTS. TTTS occurs when blood moves from one twin to the other. The twin that loses the blood is called the donor twin. The twin that receives the blood is called the recipient twin. With our boys Baby A (Jonathan) was the donor twin and Baby B (Christopher) was the recipient twin. This means that Christopher was getting more blood and nutrients than he was supposed to and Jonathan was not getting enough. This causes major problems for both twins. The recipient twin risks being born larger, with redness, too much blood, and increased blood pressure. Because of the increased blood volume, the recipient twin may develop cardiac failure. The donor twin risks being born smaller and usually has paleness, anemia, and dehydration.
When the doctor noticed the fluid discordance I broke down because I knew that TTTS was developing. Greg and I were so heartbroken in some weird way it felt like our babies were not going to survive this condition. We were told that if things did not look any better in two weeks we would be sent to a Fetal Medicine Specialist in Miami to have a laser procedure done. At our next ultrasound the fluid levels had gotten worse and one baby was larger than the other. The doctor in Miami is world renowned for his research with TTTS. He performs a procedure with a laser that cauterizes blood vessels within the placenta to try and promote equal sharing of blood and nutrients from one twin to the other. It is very important to detect TTTS early so that it can be monitored closely, if it is not detected soon enough the results are fatal. With our military insurance our specialist thought we had a better shot of getting to the doctor in Miami if we went through the director of the Fetal Medicine Department at Shands Hospital in Gainesville. So off we went to Shands. Our specialist there got right on our TTTS. He did not want to send me immediately down to Miami without trying some other techniques first because that laser procedure has a 50% success rate. Usually one twin does not survive.
Our specialist at Shands had also been part of lots of TTTS research as well and discovered succession rates if you triple your daily protein intake. Immediately I was put on bed rest and was instructed to drink three Ensure protein shakes a day. Also, we had to go to Shands once a week ( sometimes twice a week) to have ultrasounds to monitor the baby’s growths and fluid levels. At first we were told that the babies would probably be delivered around 28 weeks. At 25 weeks I had steroid shots to develop their lungs quicker and also to help fight infection in case they were born extremely early. Babies born around 28 weeks do not have a high survival rate. Basically we were buying time with anything we could do.
Each week sometimes the levels would get better and other weeks they would get worse. It was a roller coaster ride of emotions. I felt so helpless, like I could not do anything to help or protect my babies. Still our Shands specialist did not think we should have the laser procedure done once we got to 28 weeks because the babies had a chance of surviving with extreme neonatal care. As my pregnancy progressed I would go into pre term labor a lot. We spent many many nights in and out of triage here at Tallahassee Memorial Hospital and Shands Hospital. I was put on medication to stop contractions to buy more time. After about 30 weeks the levels started to progressively get better as well as the boys growths, however the boys started to have heart rate problems. They would go into tachycardia and their heart rates would not come down for several minutes. At 36 weeks pregnant I went to triage and was developing preeclampsia in addition to the boys heart rates going into tachycardia. Our doctor decided it was time to take the boys out. All of our doctors were amazed with how well my pregnancy progressed with the TTTS. It is amazing that we made it to 36 weeks, this is very uncommon in identical twin pregnancy’s with TTTS.
Born by cesarean section at 36 weeks our boys were completely healthy. Amazingly they did not have to go into the NICU. They were 6 pounds 4 ounces and 6 pounds 7 ounces ( fantastic for twins!) The only problem they had was not being able to regulate their body temperature for the first day. They had to be put under warmers. Jonathan (the donor twin) was very pale and Christopher ( the recipient twin) had more of a red color. At four months you can still tell the difference in their skin tones because of the TTTS. However it is not as noticeable as when they were born. TTTS is a very serious condition. We were very blessed that our twins were strong enough to get through it and not have any long term problems. Now you would never even know that our babies were born one month premature and had TTTS. The doctors can’t even believe their size, they have exceeded everyone’s expectations. Be optimistic, pray every day, and stay strong and things will take care of themselves. God has a plan for everyone; all you can do is keep your faith in yourself and in your babies.
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