When we were diagnosed with TTTS, we were only had it mildly at level one. I remember sitting there being told all of the possible worst-case scenarios – enlarged heart, brain damage, cerebral palsy, death of one or two of the twins. I felt so angry at this doctor going through a shopping list of disaster scenarios, ruining the joy of our first pregnancy. I walked out and said to my husband, “I don’t accept this for my boys.” We told our family, friends and church community, and got everyone to start praying.
We went on a steep learning curve trying to wrap our head around what TTTS was. We learnt that we had monozygotic twins who had a separate sack but shared a placenta. The problem is the merging of the arteries and veins on the placenta that allow the blood to flow from one twin to the other. One takes too much, the other doesn’t get enough from the placenta.
Basically at this stage, baby A was the recipient who received more of the blood and nutrients from the placenta than baby B who was the donor. This discrepancy is measured in terms of how much amniotic fluid each baby is existing in. IF the recipient baby is over 8cm of amniotic fluid and the donor is below 2cm of amniotic fluid , you are diagnosed at level one.
We were quite upset, but still really positive that our twins would be apart of the statistics that suggest 80% of level one TTTS pregnancies don’t progress and in fact get better. That was what we hoped and took hold of for our boys.
Thought Purge 