There are few moments in one’s life that they can recall every detail about a particular day. For us it began with the news we were expecting twins. This was probably the first time I was truly speechless for what seemed to be 48 hours, but was probably not long enough for my wife. That day seemed like a dream but confirmation was posted on the refrigerator door. Yeap, there are two babies.
The next moment of recall came in our 20th week of pregnancy during what was supposed to be a routine check up to finally confirm that I was going to have two Daddy’s girls. The ultra sound technician didn’t say much and paged the doctor to come in immediately. The doctor came in and there were whispers. Next we were being sat down and told that we were being affected by TTTS (Twin-to-Twin Transfusion Syndrome). TTTS is a disease of the placenta that causes one twin to receive all the nutrition and blood and the other none or very little. The diagnosis was confirmed by the ultrasound that showed one of our babies with too much fluid and the other with none. She was literally “shrink wrapped” to the placental wall without any fluid to move around in. All our doctor could tell us was he had only gone through this once before and the outcome was not favorable. I remember him telling us that we just need to get them further along alive so we can deliver them and give them a chance to live. Our care was now being transferred to a high risk specialist.
That night all we did was research books and the internet about TTTS and everything we saw gave us little hope. Everything we read told us we were going to lose our daughters. Finally we came across the TTTS Foundation website. We contacted them immediately and left a message of despair and a plea for help.
The next day we were off to the specialist. The specialist was amazed that our girls had survived this long and indicated to us the real grave likelihood of our pregnancy. We were told, but not recommended, we could terminate the pregnancy if we felt that we would not be able to handle the likely demise of our girls. These were our daughters and I would gladly lay down my life so they could have a chance at one. We would do everything we could to give them a chance and that is what we did. First the specialist performed an amniotic reduction to ease the pressure inside of the womb. We were to return in a couple of days to see if this helped.
On our doorstep when we arrived home was a large packet from a supporting organization. In it we found everything one would need and want to know about the syndrome and our options. From this we got in contact with one of only two doctors in the world that are considered the foremost experts. A few days later we were on our way to Tampa, Florida to visit Dr. Quintero.
The Trip to Florida
The Dr. visits began with us going through intense ultrasounds. I came to hate these, for every time we went into one, something was discovered that was not in our favor. First one of our twins had only a two vessel cord instead of a three; next the other twin had velamentous cord insertion (a condition where the cord inserts into the membrane instead of the placenta); then the doctor found a very peculiar anomaly in the blood flow of one of the girls that he had never seen in any of his 300+ cases. Dr. Quintero put his hand on my wife’s stomach and looked at us both and told us he would do what he could to save our girls.
My wife underwent surgery. The Dr. used a 3mm incision and used an endoscope to map out the blood vessels in the placenta, determine which ones were connecting the girls and seal them off with laser to stop the transfer of blood between them. There were some complications with the surgery. Dr. Quintero had to devise a way to move one of our twins, the one that was stuck, out of way so he could access the placenta. This enabled the Dr. to seal the correct vessel, otherwise our girls would have perished. Finally the surgery was over and the girls were alive and my wife was doing well. There was a huge sense of relief that we finally were able to do something to give our girls a chance at life. The next 24 hours were the most critical. We were in danger of the girls potentially dying from the surgery and we were in danger of premature labor due to the invasiveness of the surgery. The next day came an ultrasound. We were told before they began the ultrasound that there was a 50% chance that the girls, one or both, may not have survived. Our fears were as intense as they had ever been. By now we were very good at reading ultrasounds and knew what to look for; however that day before we could even determine a baby, the Dr. announced, “Both babies were alive!” Now we were on our way home to pray and hope.
The first four weeks post surgery was the most critical. My wife was on bed rest for the duration of the pregnancy in some form or another. If we made it fine past the four weeks, then our odds would begin to look a little better. 85% chance of one twin surviving and 45% chance of them both surviving. We had constant weekly and twice-weekly monitoring by our OB/GYN (Dr. Dorr), our specialist (Dr. Sabin), and monitoring by Dr. Quintero’s group.
At 35 weeks it was decided to deliver our girls. They had reached a point where their growth had plateaued and it was best to get them into a better environment. Due to the potential complications with the velamentous cord insertion of one of our girls, it was best for my wife to deliver by cesarean section. On June 17, 2003 our miracle babies Ashley and Aspen were born. To see them alive and fine upon delivery was my dream and now that dream came true as tears gushed from my eyes and soul. The next recall moment that will live with me forever is the honor I had in taking Ashley, held in my arms, down to the NICU. As I walked out of the OR, I could see our families and I was the first to introduce her (again full of tears) to her wonderful family. Aspen and Ashley spent only 13 days in the NICU at Littleton Adventist Hospital.
We crossed the finish line that day with Dr. Watson, who was wonderful, but we ran the marathon with Dr’s Dorr, Sabin and Quintero. We think of them often and thank them for all their care, compassion and dedication.
Today our girls are healthy and show no signs of ever having been affected by TTTS. It is nothing short of a miracle. We have made it our life’s goal to do everything in our power to provide awareness, hope and support to those parents who will be affected by TTTS and other fetal syndromes.