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The next day, on Thursday, May 31st, our fears were realized when the specialists in Madison confirmed it was highly probable that our twins were suffering from TTTS. It is not a disease per se, but rather a condition of the placenta. (The placenta is the circulatory organ that acts as a maternal-fetal lifeline.) TTTS occurs when the blood vessels lying on and within the placenta connect the twins. The "recepient" twin, typically the larger baby, gets too much nourishment because in addition to receiving its normal blood supply from the mother, this baby also receives blood from its sibling. In effect, the smaller twin ("donor twin") transfuses the larger twin. Thus, the recepient twin is often awash in amniotic fluid because it's urinating so much from all the nourishment. And because the donor twin typically doesn't receive enough nourishment from the placenta, it doesn't urinate as much so its amniotic sac appears to cling to the baby like plastic wrap. This is why both twins are at high risk of heart failure; the recepient twin's heart is working overtime, whereas the donor twin is at risk of dying of severe anemia. With our daughters, Jordan was the recepient twin and Joelle was the donor twin. Usually it's the donor twin who survives because her heart isn't overworked and exhausted, but Joelle had something else working against her that no surgery can fix -- a lack of placenta.
In many TTTS cases there just happens to be an unequal sharing of the placenta due to the randomness of how the twins' umbilical cords attach to the placenta. This was also the case with our twins. The doctors also suspected that Joelle was not properly attached to the placenta because of the very large descrepancy in the twins' size. Joelle was less than half the size of Jordan. It was estimated that the common placenta share was 20-80, but the pathology report on the placenta analysis (after the twins were born we shipped the placenta to Tampa, FL, so Dr. Quintero could study it), said that Joelle actually had only 10% of the share, and Jordan had 90%. A baby really needs at least 35% of the placenta to survive. In addition, it was confirmed that Joelle's umbilical cord was not properly attached into the "meat" of the placenta, but rather it was attached only into the membranes.
Dr. Peter Pryde was the main specialist out of five at Meriter Hospital in Madison, who diagnosed us. As the ultrasound technician, Sarah, scanned the twins, Dr. Pryde viewed the live scan in a different room. Before she was done however, Dr. Pryde came into the room and asked Sarah to take measurements on the twins. With a concerned look he let out a sigh and said, "I'm sorry, it doesn't look good for the littlier twin." My ears burned and the world suddenly seemed to be in slow motion. His words seemed unbelievable to me. He had to be wrong! There were already two matching furnished cribs set up in the nursery with matching plush bears...the nursery closet already had some matching baby girl outfits hanging up in it. We were going to raise twins! There was our beautiful daughter Joelle on the ultrasound, her heart beating...surely the doctor had to be wrong! |
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Immediately Dr. Pryde did an amniocentesis to drain 1 1/2 liters of fluid out of Jordan's sac. This involved sticking a very large needle through my abdomen and gently piercing Jordan's bag. Afterwards, I felt like a new woman. I could bend at the waist again! One of the materal symptoms of TTTS is sudden weight gain because of the extra amniotic fluid produced by the recepient twin. In hindsight, I remember my supervisor Ron had joked with me days before the diagnosis how I had suddenly "popped out." It being my first pregnancy I didn't know what to expect, especially with twins, but I remember being at a movie theatre in Madison about a week before the diagnosis and wondering if it was normal not to be able to arch my back to stretch. I literally could not bend forward at the waist to stretch my aching back. That was the first time I remember feeling nervous about being pregnant with twins. I wasn't even four months along yet and I was already very uncomfortable and found it a little difficult to breathe. Also, my "morning" sickness was still raging morning, noon, and night. In fact, I had to keep a tash of plastic bags under my seat in the truck. (Poor Jamie.) |
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