Then the nightmare began- I was diagnosed with TTTS at 17 weeks. I contacted the TTTS foundation and they federal expressed me a booklet. I read it from top to bottom religiously and I also visited the web sites of both the two doctors listed on the foundations site that performed the surgery. After everything I read I really wanted to get the surgery. It seemed like the best hope for saving our little girls. Sunday night we arrived in Tampa and settled in to the Hotel. We would meet with Dr Quintero on Monday and the surgery was scheduled for Tuesday morning at 9:00am. That night my husband and I decided to name the girls. We knew they were girls because we had sneaked a peak at the records that we were bringing to Tampa with us. We wanted to be surprised like we did with our first but we were beyond that at this point. At this point all we wanted were our babies. So after much discussion we named them Jacqueline Faith and Brittany Hope.
On Monday we had a few tests taken and they again confirmed the diagnosis of TTTS. Tuesday morning we arrived and I was wheeled into the OR. They had the surgery on TV’s in color in the room. I actually saw both my little girls inside my womb. The surgery lasted about an hour and a half and then they wheeled me to the recovery room. They had drained 2 liters of fluid out of me after they were done lasering the connections. Dr Qunitero said it went well but that Brittany had lost a lot of blood. Brittany was what they call the “Donor” twin. All the blood and nutrients that the placenta passed to her bypassed her and went right to her sister. The concern with that is that the “Donor” twin can die of anemia. He gave her about a 50, 50 chance of survival. Wednesday morning at 9:00am they wheeled me down to the sonogram room and as soon as the sonographer put the machine on me I saw Brittany lying there. She was no longer “stuck” to my abdomen but the worst happened, she had died. I was overwhelmed with grief. My husband and I just held each other and cried like babies. Dr Quintero was not in so one of the other Doctors from the practice came in and he explained to us that they had thought this might happen but to try and hang in there because Jacqueline looked to be doing just great. She was the one they call the “Recipient” twin, she was receiving all the nutrients and blood and the danger with that is that she could develop cardiac failure and she was showing no signs of that at all.
We packed our bags and headed back to Buffalo. Overwhelmed with grief but also happy that Jacqueline looked to be doing so well. The day after we got back I went to see my regular Doctor who pretty much told me to expect a singleton pregnancy from now on. He also wanted me to go up to Sisters Hospital to see the perontologist. The next day I went and the Doctor there rushed me into the ER where he immediately performed a amniocentesis on me. My fluid levels had not decreased and my cervix was completely funneled on top. I was put in an upside down position and remained in the hospital. They eventually let me lay flat but I could not get up, not even to use the restroom. And there I laid for three weeks with no signs of any problems. Jacqueline still looked great and was progressing nicely. At 24 weeks they were going to start injecting her with a steroid that would help her brain and lungs develop faster.
Four days prior to my 24 week mark I went into labor. It was a Friday night. They stopped my labor but I was also leaking fluids. Something seemed terribly wrong to me. I started having contractions again on Saturday. I kept telling the nurse and she discarded my concern because the monitor was showing nothing. She kept telling me I just had cramps. By the time the next nurse came on the new shift at 3:00 pm, I called her into the room and told her. My contractions had to be less than 5 minutes apart at this point. She immediately put her hand on my stomach and ran out the room to get the Doctor. The monitor was placed on me wrong. They wheeled me down to the ER and tried to stop my labor but it had progressed to the point of no return. I had a fever of about 103 and they were now concerned for my life. I delivered Jacqueline first then Brittany, it was 10:15 pm. Jacqueline lived until 12:15 am. As I held the two of them, I cried like a baby. I would not have either of them to bring home. All I would have to bring home was a terrible feeling of emptiness inside. After everything we had been through, both our little girls were gone. I still have a lot of pain, anger and sadness inside me. My husband and I bought our own grave sites and the girls are buried at the foot of my grave. I visit them frequently, it gives me some peace.
And God Bless all of you who have suffered this disease no matter what the outcome was.
Anne M. Kent