TTTS Parent Stories: Caroline and Allison
I was diagnosed with TTTS at 20 weeks into my pregnancy. For almost three weeks prior, I had been suffering from extreme back pain. As this was my first pregnancy, with twins no less, I believed the doctor when she told me it was normal. So, I suffered until my scheduled ultrasound appointment. The TTTS was quite obvious at this appointment. My little donor had no measurable fluid in her sac. It was Friday, so I was sent home on bedrest through the weekend until we could see the perinatologist first thing Monday.
Monday, the perinatologist confirmed the diagnosis, and presented my husband and I with the grim statistics. 80-100% mortality if we did nothing, 40% chance of saving both babies with intervention, and 60% chance of saving only one baby with intervention. My doctor presented us with three choices, amnioreduction, septostomy, or laser surgery. He gave us the night in the hospital to decide.
We called our parents and had them research our options on the web. We all agreed that laser was the best choice for us. We called and spoke with Dr. De Lia and Dr. Quintero. Though both doctors were wonderful, we chose Dr. De Lia. He started me on a high-protein diet immediately...three Ensure Plus’s, slowly, in-between meals. Yuck!! We had plans to fly out to see him for the surgery, but my cervix had other ideas. By this time, I was dialated 2-3 cm.
We decided the best course was to undergo an amnioreduction, then have a cerclage placed to sew my cervix shut. I had two liters of fluid removed, with the cerclage surgery the following day. I started contracting with both procedures and was given terbutaline to stop them. Our new plan was to have weekly ultrasounds and hop on a plane to see Dr. De Lia when the fluid built back up.
After a week in the hospital, I was sent home on strict bedrest. I made it
three weeks at home without the fluid building back up and without premature labor. However, at the end of those three weeks, I checked into the hospital for premature labor and ended up spending the rest of my pregnancy there.
Aside from periodic episodes of premature labor, and a nasty UTI, the first
four weeks in the hospital were relatively uneventful. Not until my 29th week of pregnancy did things get hairy again. At that point, I knew the TTTS was back. I had the same horrible back pain as before. I told my doctors that it was back. They did two ultrasounds that day. Both times, everything looked fine. Both babies had fluid. In fact, the fluid levels around BOTH babies were a little on the high side. I believed what I saw on the ultrasound screen, but my pain was still telling me a different story. Once again, I believed the notion that this pain was due to a normal pregnancy with twins.
A few days later, my water broke, and my girls were delivered by emergency c-section. Turns out, the TTTS was indeed back. My dividing membrane had ruptured, and my recipient was filling up the sacs of both her and her sister.
Allison Julianna, our recipient, was born weighing 3 lb. 13 oz. Caroline Leah, our donor, was born weighing 2lb. 8 oz. They spent six and eight weeks, respectively, in the NICU. Allison came home on oxygen and both came home with monitors. They both had BPD, reflux, swallowing problems, and developmental delays. Now, at 15 months, they have overcome the majority of these problems. The doctors expect them to grow up perfectly healthy and "normal".
I took away some lessons from my experience with TTTS. Most important is that it is swift and unpredictable. Don’t ever think you’ve got it beat.
We also credit the high-protein diet with saving the lives of our little girls. We truly believe that it helped keep the TTTS at bay for those 9 valuable weeks. Our girl’s middle names are after Dr. De Lia for this reason. Also, always make sure the doctors visualize the dividing membrane on each and every ultrasound. Finally, I have learned just how lucky we are.
We were fortunate to have two survivors. Sadly, not every family is that fortunate.
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