TTTS Parent Stories: Shannon & Greg Bennet
After three years of trying to conceive a baby, including several invasive and costly fertility treatments, my husband and I found out that we were finally pregnant.
I knew immediately that we were having twins – I just knew. At 7 weeks gestation our first ultrasound showed that I was right. We had always wanted two children, we just didn’t expect to get them at the same time. I was excited; I think my husband, Greg, was in shock.
We had our first extensive ultrasound at 16 weeks, and we hoped that the babies would be positioned so that we could tell their gender. We had names picked out for either case: Alec and Cameron for boys, Grace and Avery for girls. A few minutes after the technician started the scan, she told us that we were having boys! Greg and I both got tears in our eyes – we were so happy.
After the doctor reviewed the scan, though, he told us that we had Twin-to-Twin Transfusion Syndrome.
I had already read about this disease on the Internet, so I knew that a diagnosis before 20 weeks gestation, if not treated, came with a 100% mortality rate for both babies. Of course, I forgot about the "if not treated" part, so I started to cry and I just couldn’t stop – we were going to lose both of the babies. But the doctor told us that we were still in the mild stage of the disease, and that it could stall or even go away on its own.
Over the next four weeks we watched the ultrasounds show one baby grow to 40% bigger than his brother, his little heart struggling with the pressure of too much amniotic fluid and blood, while the other baby stopped growing and stopped processing nutrients, unable to move his little body at all as his amniotic fluid disappeared.
It was time for treatment.
Fortunately, we were blessed with a team of knowledgeable doctors who pointed us in the direction of Dr. Ruben Quintero, a pioneer of a very specific kind of laser surgery that could disconnect the shared blood vessels that were causing the problem. We did extensive research on TTTS and Dr. Quintero on the Internet, knowing that our babies were slowly dying, and decided that surgery was our only option.
So at 20 weeks gestation, we traveled from our home in Austin, Texas to Tampa Florida. I had my first real contraction in the Austin airport, and was admitted to the hospital soon after we arrived in Tampa. The surgery was almost cancelled, but they were finally able to stop my contractions, and Dr. Quintero operated on our precious boys.
He told us before the surgery that we had an 83% chance of saving at least one baby, and a 50% chance of saving them both. I didn’t like those odds, but they were better than zero, and Greg told me that they were "hall of fame" numbers.
As they took me down to the operating room, I couldn’t stop crying, because I knew that it might be the last time I ever felt the little kicks that had become so familiar. As they gave me the anesthesia, I looked at Dr. Quintero, and I prayed that I would wake up with two babies.
The day after the procedure, we still saw two little heartbeats on the ultrasound, and Dr. Quintero told us that if they both survived the four weeks following the surgery, the odds were overwhelmingly in our favor that they would survive the remainder of the pregnancy.Two weeks and five days later, I went in for a routine check-up. The exam revealed that I was 1 cm dilated. Ten minutes on the uterine monitor showed that I was also having contractions, so the doctor sent us to the hospital.
Our perinatologist sat down next to my bed and told us that 50% of women with my symptoms of pre-term labor deliver within 48 hours of the onset of those symptoms. Since I had a mild fever and a tender stomach, in addition to the cervical dilation and contractions, he thought that I might have an infection from the surgery. If my fever worsened, he would have to deliver the babies immediately, because keeping them with a uterine infection would put my life in danger.
Since we were only 22 weeks and two days into the pregnancy, he told us that the babies would not survive delivery. 24 weeks’ gestation is the point of viability, and we were too far away from that point. If they were to arrive in the next 48 hours, the hospital staff would give us some time with them to say goodbye, then they would take them away, and it would all be over. We just had to wait and see what would happen. It was the worst day of my life.
Later that evening, a nun who performs healing touch came to see me. As she prayed over me, my contractions slowed down. Although they went up and down over the next few days, my fever went away and my stomach was no longer tender, so the doctor let me go home, still pregnant, on strict bed rest.
One day shy of our ultimate goal of 32 weeks, I went to the doctor for a non-stress test. I had been hospitalized twice in previous weeks for pre-term labor, and the babies had received two rounds of steroid shots, in case they came early. But this time I was not feeling contractions; I just felt feel like something was not right - I hadn't felt one of the babies move in several hours (very unusual for our little kickers).
The doctor was concerned about the quiet baby’s heart rate: it seemed to be dropping more and staying low more than it should. So off we went to the hospital for more monitoring. The perinatologist did an ultrasound and discovered that there was almost no amniotic fluid around our recipient baby - it seemed to have been slowly disappearing, as if the TTTS had reversed itself – no wonder he wasn’t moving.
He told us that he would check again the next morning, and that if the fluid level had dropped any more, we would have to deliver. Greg had planned to go out of town the next morning on business, but the doctor recommended that he cancel his trip, as she didn't want him to miss the birth of his sons.
The next morning (32 weeks at last!), the ultrasound showed the recipient’s fluid level was even lower. The doctor told us that it was time to meet our children. My dad jumped on a plane from Oklahoma City and made it to the hospital about an hour before the boys arrived. Our entire family was there!
Alec Fitzgerald, our donor twin, was born at 6:32 p.m., weighing four pounds even. Cameron Michael, our recipient, followed five minutes later at 6:37 p.m., weighing 3 pounds, 10 ounces.
Amazingly, although Dr. Quintero warned us that each baby needed to have at least a 30% share of the placenta to survive (a lesser amount would not provide enough blood, nutrients, oxygen, etc. to support a growing fetus), the pathology report we received several months after the babies were born showed that Alec, our donor made it to us with only 17% of the placenta. He not only survived, he surpassed his brother in weight inside the womb (and continues to be bigger!) with less than half of the required share. God truly blessed our family!
Ours is a wonderful success story, made possible by God, constructed by the genius of doctors, the loving care of an amazing family, and the prayers of everyone we know and a whole slew of people we never met, including a cloister of nuns in Colorado!
I still look at message boards for pregnant women on the Internet, and I see stories of many twins who have the same symptoms ours had, but the advice given to the parents by their trusted doctors is very different from the advice we received. Some doctors, knowing the mortality rate for an early diagnosis, recommend aborting the babies (again, these are healthy babies, only the placenta is diseased). Others tell their patients that there is nothing that can be done, that they can only hope and pray for the best.
Still others do not know enough about the disease to even diagnose it!
I look at my sons, happy and healthy 20-month-old boys, and I cannot imagine a life without them. I cannot imagine being faced with those options. So I have dedicated myself to sharing what I have learned, so that families do not lose their precious children unnecessarily. Not everyone comes through TTTS as well as we did: some end up losing one or both babies, even with the surgery.
Dr. Quintero gives them a chance that they would not otherwise have, but they have to know about him and the disease before he can help them.
No comments:
Post a Comment