No one looking at identical twins Miles and James Lewis, now 4 months old, would know they had a rocky start, their lives threatened by the way blood passed between them and the placenta they shared. They had twin-to-twin transfusion syndrome, a serious complication that can kill.
Parents Libby and Rich Lewis, Orem, were referred to maternal-fetal medicine specialists Dr. Robert Ball and Dr. Michael Belfort of St. Mark's Hospital. They're the only physicians in the region performing certain procedures designed to save the lives of identical twins in crisis.
The syndrome, called TTTS, occurs when one identical twin gets too much blood and the other doesn't get enough. Miles got too much, so he had excessive amniotic fluid, which can lead to heart failure and stroke. James had too little and thus very little amniotic fluid, so he was dehydrated, not growing well and at risk of severe anemia. Either or both could have died in utero.
Ball describes TTTS as an act of nature in which "two completely normal, healthy fetuses" are imperiled simply by the way they're connected to the placenta. TTTS occurs in between 10 and 15 percent of identical-twin pregnancies. When it isn't treated, the chance that one or both twins will die is 80 to 90 percent.
In the past, Utah families had to travel to a specialist (the closest was in San Francisco) or count on close monitoring and "hope for the best," says MountainStar chief medical officer Dr. Scott Williams. Now the St. Mark's physicians plan to train others, as well as assist using telemedicine. They'll travel to help twins who are in trouble. Hospital Corporation of America, which owns St. Mark's and several other Utah hospitals under the MountainStar banner, has launched a fetal therapy initiative and Belfort and Ball will work with and train doctors in Colorado, Texas, Kansas, Oklahoma and Virginia, with expansion likely. Area outreach sites include Ogden Regional Medical Center, Timpanogos Hospital and Eastern Idaho Regional Medical Center in Idaho Falls.
When Janis and Christopher Hansen, Orem, who are expecting identical twin boys, learned they had TTTS, the fetal-medicine experts opted to do a laser therapy. In early December, they used laser to close off the shared blood vessels. Now mom, who is 22 weeks along, is on bed rest, although she took a field trip to Salt Lake City for the press conference Monday announcing the new procedures. She is a nurse and said they'd hoped that it would save at least one of her twins. That both appear to be doing well is a source of great joy.
The laser treatment is curative, but not without risk. At least one twin survives about 80 percent of the time. There is a small possibility that a survivor will have brain injury, so it's not undertaken without careful consideration, says Ball. And it can be somewhat risky for mom, too.
Libby Lewis had the other TTTS treatment, serial amnioreduction, in which excess fluid is removed from the baby who has too much. Its average success rate is 50-65 percent that at least one twin will survive. But as many as 30 percent may have a neurological handicap. And it's typically used in milder cases of TTTS.
Lewis was twice slated for laser treatment, but the placement of and issues with the placenta made it too risky, she says. Balls says that when the placenta is on the back wall of the uterus, it's like looking down from a ladder and easier to operate. When it's in front, it's much trickier, like trying to paint a ceiling that's over and behind you.
TTTS is sometimes hard to differentiate from other things, so Ball and Belfort examine scans and do their own examinations to confirm diagnosis. Then they work together, pooling their expertise and observations since it's important to go after the right blood vessels and leave the others alone. Ball jokingly describes a witness view of an operations as watching an old married couple "quibbling."
Always, potential benefits and risks have to be weighed, they say.
Other specialty treatments now offered through St. Mark's fetal medicine program are radiofrequency ablation for Twin Reversal Arterial Perfusion (TRAP) and shunt procedures to drain excess fluid in a fetus' bladder, abdomen or chest.In TRAP, during early development, the blood flow in one twin reverses so that one gets blood that has already been deoxygenated by the other. That twin cannot develop properly and steps must be taken to save the other twin.
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