Trevor and Tyson's Story

I would like to share our story of how TTTS touched our lives. After having the proverbial "one of each" children with an 8-year-old daughter and four-year-old son, we were satisfied that we were finished having children. The one thing we didn't realize was that God had a much bigger plan for us.

After finding out we were pregnant again, I was uneasy and fearful because I had suffered from a toxemia-related condition called HELLP Syndrome with our son 4 years earlier. My mind was eased quickly as we met with the high-risk obstetrician in the practice I attended. I was feeling more naseous and overwhelmingly tired in the first few weeks of my pregnancy, not to mention larger every day. At my 14 week appointment I was already comfortably wearing maternity clothes and we laughed it off as the "third pregnancy curse", and I decided it must just mean that my body knew exactly what to do on this third time around. By 18 weeks, I was already uncomfortable and larger than I felt anyone should be regardless of how many times they'd been pregnant. I asked the doctor to measure my abdomen, and he did twice. I still don't know what I measured that day, but it was enough of an overage that he went ahead and scheduled my ultrasound for the next week.

I had elected to have the triple-screen blood test done, wanting to have everything checked and verified as normal to keep my inner peace, at this time still afraid of repeating the scare from my earlier pregnancy. Five days later, I received a phone call from the doctor's office to inform me that my blood test had come back abnormal. When I questioned the nurse about the possible causes of the abnormal test, I was told that it was most likely a false-positive result, but could be an indicator of spina-bifida or even a multiple prenancy.

We cracked many jokes aout what we would do if the "third time was the charm" and we had twins. I think I was trying to keep my mind off the thought of our baby having a birth defect. I'll never forget my husband's reaction when the sonographer turned on the machine and promptly showed us the two heads first and said, "Well, you've got twins." He left his chair and was across the room at my side all in one movement. "You've gotta be kiddin' me!" was his reply. We went through the rest of the ultrasound in what seemed like seconds as she took the needed measurements. Even though I had normal pregnancies before and had never been exposed to anything abnormal, I had seen enough to know that one of our babies was way too small to be okay. We conferenced with one of the OBs and found that we would be seeing a maternal-fetal specialist to have a level II ultrasound. Still, we were unaware of the severity of our situation.

I was familiar with TTTS after having a friend who had recently had twin girls who had survived the condition, but we never thought that's what we were actually up against. We had convinced ourselves that we just had one small baby. The diagnosis hit me in the gut and sucked the breath from me. When we were forced to accept the best-chance odds at 70% with laser surgery, 50% with amnioreduction, and less than 50% with no treatment, I felt as though our identical boys (as we had found out) had received a death sentence.

My husband remained ever the optimist and said nothing as I sobbed but rubbed my hand and reminded me that we would get through this. After one good day of crying I decided it would not change anything and perhaps my efforts would be better channeled toward the positive. I met with the Fetal Care Center at Cincinnati Children's Hospital, thankfully only an hour from our home. I had heard that we would be in the best care possible, but was totally convinced that we were in the right place from our very first meeting.

After going through the battery of testing in one very long day, what air I had pumped into my sails was completely gone. We learned that our boys were about as bad as it could get. The blood flows were abnormal, our smaller baby had begun head-sparing to preserve life, and there was an 8 cm disparity in the amniotic fluid depth for each baby. We decided to go back the next day for what would be the first of 2 amnioreduction procedures to alleviate the pressure of the fluid on the larger baby and give the smaller baby a chance to expand his amniotic sac. I also went immediately on bed rest, and am so grateful to my employer for the opportunity to do so.

In all, I spent 11 weeks on bed rest, getting up only to attend doctor appointments at the Fetal Care Center (kudos to Dr. Crombleholme and Dr. Livingston and staffs), to shower only when necessary, and use the restroom. I drank 3 Ensure protein drinks every day, and as much water as humanly possible without growing gills and scales.

We gave birth to twin boys on Feb. 16, 2006 with the recipient twin weighing 4 lbs. 5 oz. and the donor twin weighing 3 lbs. 2 oz. The larger twin came home after 3 weeks in the NICU, but our smaller son spent a full 8 weeks in the hospital. We found out that he has a genetic condition called Goldenhar Syndrome or hemifacial microsomia. At first I couldn't even digest this information. I specifically remember praying to God and almost trying to make a deal with him that I could handle a disorder or anything like that if he would just give me these boys. I could handle anything but losing them. As we found out more about the disorder, it was decided that it was a fluke thing, a sporadic case, and that his twin did not have it. It was also presented as a "very mild" case. He is only mildly afflicted, but to us it didn't matter. At least we had him; we had them both.

He remains 4 pounds smaller than his twin, but both boys are growing wonderfully. Sometimes it feels like the whole ordeal happened in a dream or to someone else. My husband and I both still sit and stare in awe that we are the parents of twins. we still look at each other from time to time and say, "There really were two!"

Molly Ellis
Mother of TTTS Survivors Trevor & Tyson
Georgetown, OH