Twin-to-Twin Transfusion Syndrome
Twin-to-Twin Transfusion Syndrome presents with varying degrees of severity at different stages of pregnancy, so each case is different and requires a unique course of treatment. Mild cases of TTTS, in which only a bit of extra fluid is in the recipient twin’s amniotic sac and there is only a slight size disparity between the babies, are sometimes closely watched but managed without invasive procedures if there is no immediate risk to either twin.
According to Dr. De Lia, these “early stage TTTS signs may resolve with horizontal bed rest and nutritional therapy alone.” The nutritional therapy amounts to having the mother drink several high calorie, concentrated protein drinks such as Boost or Ensure each day because Dr. De Lia discovered that 100 percent of mothers diagnosed with TTTS in the second trimester are both anemic and malnourished. Restoring the proper nutritional and chemical balance in the mother’s body sometimes halts the progress of her babies’ illness.
A procedure known as therapeutic amniocentesis or serial amniocentesis is the most common therapy for TTTS, with a success rate of between 50 to 60 percent. The technique involves inserting a large needle into the mother’s womb to remove fluid from the recipient twin’s amniotic sac. Sometimes as much as one to three quarts of fluid are removed and the procedure is repeated as often as every other day. Serial amniocentesis is usually performed until the babies are old enough to survive outside the womb, at which point they are delivered for their own safety.
Prenatal surgery is an even more successful treatment. In 1988 Dr. De Lia developed the operation known as FLOC (fetoscopic laser occlusion of the connecting blood vessels), which uses laser light to disconnect the shared blood vessels, thereby ending the unequal distribution of bodily fluids. In 90 percent of the cases when FLOC is performed, at least one twin survives, and both babies live 68 percent of the time. Only 3 percent of the survivors experience birth defects, compared to up to 25 percent with other methods.
In the most severe cases, if laser surgery isn’t possible but there’s a chance to save one fetus, umbilical cord ligation (tying off) is performed on the weaker baby, causing it to die in hopes that its twin will survive. This is done because the unplanned death of one fetus can cause its blood to suddenly rush into its co-twin, resulting in both of their deaths. Disconnecting the umbilical cord of the sicker fetus is a last-ditch effort to try to save the stronger twin. Likewise, the complete termination of the pregnancy is also an option.
In the fortunate cases when both babies survive, they are almost always delivered early and require time in the neonatal intensive care unit to treat complications due to prematurity and TTTS-related problems. For instance, the donor twin may require a blood transfusion after pumping all its blood to its sibling in utero. The babies may also appear different at first, with the recipient baby looking larger and ruddier due to the extra blood in its system, and the donor baby weighing less and appearing paler. In some cases, one child suffers from birth defects, while the other does not. And a good percentage of siblings come home from the hospital looking just as twins should—exactly like each other.
Because Twin-to-Twin Transfusion Syndrome is such a scary and often tragic disease, there are several organizations dedicated to the education and support of parents currently undergoing treatment for TTTS and those whose lives have been affected by it.
To learn more about Twin-to-Twin Transfusion Syndrome, find a physician who specializes in the treatment of this illness, or speak with other parents about their experiences, please see the additional TTTS resources listed below.
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