Life-Saving Baby Doctors

Life-Saving Baby Doctors
The Story of My TTTS Twin Girls
By Katie Fast

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On a sunny morning in late July last year, I stopped by the perinatologist's office at California Pacific Medical Center in San Francisco for what I thought would be a routine ultrasound. I was 16 ½ weeks pregnant with our identical twins and was just thrilled at being pregnant. At my appointment, the ultrasound technician very professionally went about the business of scanning and measuring our babies. Our perinatologist, Dr. Carl Otto, then came in after reviewing the ultrasound pictures with a grim, drawn look. "I'm so sorry to tell you, but your babies are suffering from Twin-to-Twin Transfusion Syndrome," he said. I sat, stunned, not knowing what it was, but presumed it was serious. He provided me with devastating information and statistics that confirmed my fears.

Twin-to-Twin Transfusion Syndrome (TTTS) is a disease that strikes about 10% of all identical twin pregnancies. In the US, it affects over 7,500 babies-or 3,800 pregnancies-each year. This serious condition occurs when twins share a single placenta, which contains blood vessels connecting the twins' blood streams. In a sense they are like conjoined (or Siamese) twins, but are connected in the placenta instead of their bodies. One baby (the recipient) may get too much blood, while the other (the donor) is losing blood through the abnormal connections. The recipient may die in heart failure from a cardiovascular system overload, and subsequent over-production of quarts of amniotic fluid. The donor may die from the loss of blood, and tends to have very little amniotic fluid. The loss rate may be as high as 80 to 100 percent for twins who develop TTTS in the second trimester. TTTS babies may die in the uterus or at birth from prematurity. More than half those who survive suffer from many serious birth defects including cerebral palsy.

There were several courses of treatment that Dr. Otto discussed with me that day. One was reducing the excess amniotic fluid that developed around the recipient baby, done via amniocenteses. At a 50% chance of surviving twins, this procedure might balance the amount of amniotic fluid surrounding each baby and hopefully spur the placenta into regularity once again. Another was an in-utero surgery called fetoscopic laser occlusion of the connecting vessels, pioneered by obstetrician Dr. Julian E. De Lia. Because of the situation's urgency, Dr. Otto recommended an amniocentesis within the next hour, and that I call Dr. De Lia later to learn more about his surgery.

Terrified and panicked, I called my husband from the doctor's office. We agreed to do the amnioreduction right away. I sat in the doctor's office lobby by myself and cried openly. I felt hopeless and helpless, wanting to save the babies who were struggling for life inside of me but not knowing how. Dr. Otto took 2 liters of fluid from my uterus that day, and ordered me to remain on bed rest until my appointment 4 days later.

I left a message that very day for Dr. De Lia. He called me from his home in Milwaukee late that same night, and spoke to my husband and me for nearly an hour about TTTS and its treatment. He then told us more about the placental laser procedure.

The technique uses a small 3.5millimeter scope to identify, and then use the laser to coagulate the connecting vessels between the twins. The twins become separate and the passage of blood from one to the other stops. The surgery is performed in "pre-viable" pregnancies (less than 25 weeks), where delivery of the TTTS twins is not an option. Dr. De Lia told us that for now, my best bet was to stay on bed rest and continue the amniocenteses if necessary.

One agonizing week later, and after a second amnioreduction of 1 more liter of fluid, the TTTS appeared to be getting worse. The twins' size difference was greater, our recipient's heart was starting to thicken, and Dr. Otto felt the future bleak for the twins without Dr. De Lia's laser surgery. Mary and the TTTS Foundation arranged for us to fly complementary on Milwaukee's Midwest Airlines. They have a program called 'Miracle Miles,' where frequent fliers donate mileage so that families with sick children can fly to leading medical centers for treatment.

I underwent the laser surgery on August 14th, 2002, at only 18 1/2 weeks of pregnancy. The surgery, which Dr. De Lia pioneered, is a miracle to thousands of otherwise hopeless expectant parents. In 90% of the cases where the operation is performed, at least one twin survives, and in 68% both twins live. Less than two percent of the survivors have any disabilities or birth defects, compared to up to 30% with some other treatments. Dr. De Lia began his TTTS research in 1983, and five years later the first placental laser surgery was performed October 3, 1988.

I sat waiting, following the surgery, hoping of course for the best outcome but still preparing for the worst. I was ordered to strict bed rest for the remainder of my pregnancy, which hopefully would last another 10 weeks, when they would be at 28 weeks' gestational age, a big milestone in the eyes of medical professionals.

On December 15th, 2002, over eighteen weeks after their in-utero surgery, our beautiful little angels Sophie and Sara were born.... small of course, but otherwise healthy and perfect. As I rub noses with these two tiny and delightful faces and hear their squeaks and babble, I am again overwhelmed with appreciation of what we have almost lost. Every August 14th, on the anniversary of our babies' life-saving surgery, we will celebrate a little mini-milestone for the girls- the day they were given a second chance at living and thriving as they do today.

For further information, visit: www.TTTSfoundation.org or http://www.covhealth.org/stellent/groups/public/documents/www/cov_014262.hcsp