My husband and I found out we were pregnant over Memorial Day weekend. It was still really early, but I was having some side pain and my sister had an ectopic pregnancy once so I wanted to get checked out. We went in for our first OB appointment with feelings of excitement and nervousness.
My husband held my hand as the doctor pulled up the ultrasound screen. There was the sac in normal position, but it was measuring a week behind where we thought we were. The doctor told us to come back in 1 – 2 weeks to make sure it was growing. We were measuring at 5.5 weeks.
The next week we came back and had the same feelings of excitement to see the baby, but we were also concerned that something might not be right. The doctor pulled up the screen and said, “Oh there are two egg yolks in there!” I just started laughing and said, “What?!” She told us that we were having twins and we were 6.5 weeks along. My husband and I were in shock and all we could do was laugh and take it all in. The doctor could already hear the heartbeats so we got to listen and it was the sweetest moment. The doctor proceeded to tell us all of the increased risks associated with having a twin pregnancy. She wasn’t sure what type of twins we had at the moment and she wanted us to see a specialist. From what she could see, she thought they may be fraternal twins because the
She wasn’t sure what type of twins we had at the moment and she wanted us to see a specialist. From what she could see, she thought they may be fraternal twins because the cords were going in two different directions and she could see that the babies were in two different sacs. We were a little relieved hearing they most likely were fraternal as there are less risks associated with those types of twins.
All this information was overwhelming. It is at this moment where I learned that I could not worry over every little complication. I thought that you really started worrying as a mother when your child is born, but I now know the worry begins the moment you learn you are pregnant.
I had to just trust in God’s plan for these baby’s lives.
We went to see our high-risk specialist at 12 weeks to confirm what type of twins we were going to have. The technician started the ultrasound and told us there was one placenta and that our twins were identical. My mind started racing inside. She also told us she could be 55% sure that we were having boys. My husband had the biggest smile on his face hearing that news. We were secretly hoping they would be boys!
We were taken into a different room to discuss the results of the ultrasound. The doctor told us that we were having identical twins. One twin had a velamentous cord insertion to the placenta which is where the cord attaches to the side of the placenta into the fetal membrane. This explains why it looked like our cords were going to different placentas and our OB thought they were fraternal. He let us know about another risk called twin to twin transfusion syndrome. He explained it briefly and just let us know we would be having ultrasounds every other week to monitor it closely. He said only 10-15% of identical twins get TTTS. I decided I wasn’t going to do a lot of research or worry about it until we had to, if we had to. I am a worrier and I knew the less information I had at the moment, the better. My husband is really good about not worrying prematurely.
For the next couple of weeks, we continued our appointments and watched the twins grow steadily and healthily.
Tuesday, August 25th, 2015, we went in for our routine check up. We were laughing and chatting with the tech and the babies looked great to us. They were the same size which is what I was always looking for because I thought that meant they wouldn’t have the TTTS. The doctor came into the room and immediately cut right to the chase. He let us know that we had begun to show the signs for TTTS. One twin had a fluid level of over 8cm and the other twin had under 2. They also did not see a bladder on baby A (our donor). He then said he was going to go get on the phone with UCSF and see if they could get me in right away as the disease moves fast. I got dressed and we moved into another room to meet with our midwife and doctor to hear the next steps. I felt like my mind was racing and I couldn’t believe this was actually happening. Once we got into the other room, I lost it and started crying.
I felt like my mind was racing and I couldn’t believe this was actually happening. Once we got into the other room, I lost it and started crying. The midwife was amazing. She used to work at the fetal center at UCSF and she was able to tell us a lot of information.
We were told we were most likely at stage 2, but that UCSF will want to do more ultrasounds and a cardio echogram to diagnose our stage and let us know our options. We felt so blessed that UCSF was only an hour away and they had one of the leading surgeons for the procedure that could save our babies. We went up on Thursday and after 5 hours of ultrasounds, we were told we had progressed to stage 3 already. Baby A was our donor and had no bladder. Baby B was our recipient and had cardiomyopathy which means the muscles in the heart chamber had thickened pump the increased volume of blood he was getting. Our poor baby A was stuck in his sac with barely any fluid, while baby B looked like he was swimming in the ocean and having the time of his life. We always knew he was our mover and now we knew why. After giving us all of our options, we decided to move forward with the surgery. Both babies had a 50% chance of surviving and one baby had an 80% chance of surviving. The odds didn’t seem that hopeful to me, but if we did nothing, they both would not make it. The surgeon recommended that we come in the next morning for surgery. You can imagine how fast this all happened. We found out around 4pm on Tuesday night and we were scheduled to come in for surgery at 6am on Friday morning. We barely had time to process and were in action mode.
After hearing all of our options, we decided to move forward with the surgery. Both babies had a 50% chance of surviving and one baby had an 80% chance of surviving. The odds didn’t seem that hopeful to me, but if we did nothing, they both would not make it.
The surgeon recommended that we come in the next morning for surgery. You can imagine how fast this all happened. We found out around 4pm on Tuesday night and we were scheduled to come in for surgery at 6am on Friday morning. We barely had time to process and were in action mode.
The next morning we went in for the fetal laser surgery. It is unreal what doctors and technology can do these days. The doctor went in with a scope to the placenta and lasered the vessels that were being shared. This took all of 10 minutes. After surgery we stayed in the hospital for 1 night. This is a wait and see period where they check to see if you still have two heartbeats after the surgery. It was probably the longest wait of my life. Finally the doctor came in with the doppler and we heard the most beautiful noise- two heartbeats!
I wish I could say that the road was easy from here on out. The fact is that it is hard. Every day is a blessing. Every week is a huge milestone. For everyone with this disease, you pray everyday that you don’t go into labor, that you see healthy babies on the ultrasound every week, that the babies fluid levels out and the heart and other organs heal, that your babies are delivered at a safe gestational period, that they make it through labor okay. Then they worry about what developmental issues they may be born with due to this disease. I could not have survived this period without my faith. Jesus met me in my darkest thoughts and worries and sustained me.
These kids don’t belong to me and they have their own story to tell and to share with the world.
My husband and I are one of the “lucky” few. We remained healthy and went in to be induced at 36.5 weeks!! And on top of that, both of the boys were head down and healthy and I had them vaginally! It was such a blessing after the hard journey we had been on. Jackson was born on January 6, 2016 at 10:16pm. He weighed 6 pounds 3 ounces! His baby brother, Bradley, was born at 10:35pm and weighed 5 pounds 9 ounces. The boys were healthy and they even got to come home with Mom and Dad from the hospital!
After getting the diagnosis of TTTS, I never thought this ending could be possible and I know of many others that are not as fortunate. I want to share my story because I know that this road is hard, painful, and heartbreaking. But you are not alone and there are positive outcomes. There are many Facebook support groups which were extremely helpful and encouraging. I hope that my story can encourage people that there are positive outcomes and to keep fighting. I also hope to bring awareness around what TTTS is and how dangerous and deadly it can be. So many of our nurses and technicians along the way had no idea what TTTS is. I am already impressed by how far we have come with the treatment options and I pray that one day the outcome will be a 100% survival rate!
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