Twin babies survive syndrome; now healthy at home

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Rachel Lendyak-Peters says she probably spends more time up with her infant twin sons than their middle-of-the-night feeding requires, but she likes to watch them just to make sure they're still breathing. Sometimes the Verona woman prods them to get a physical reaction.

Her nervous vigilance is understandable. It's nothing short of a medical miracle that Greyson and Sawyer Peters, who turned 4 months old on Dec. 1, are not just alive, but healthy and thriving.

Make that three medical miracles.

They twice underwent laser surgery while still in the uterus, at 16 weeks and 22 weeks gestation, because they were suffering from twin-twin transfusion syndrome. It is a rare life-threatening disease occurring in just 10 percent of the pregnancies in which identical twins are in separate amniotic sacs but share a placenta.

They also were born about eight weeks premature and spent some two months in the neonatal intensive care unit at Magee-Womens Hospital of UPMC.

"It's hard to think about because it was so bad," said Ms. Lendyak-Peters, 26.

The first two medical miracles were the successful in utero surgeries for the dangerous TTTS.

With fetus twins, blood vessels normally fan out from each twin's umbilical cord and connect to the placenta. But sometimes vessels of one twin find vessels of the other and form connections. Blood passes freely from the "donor twin" to the "recipient twin," and twin-twin transfusion syndrome occurs.

The donor twin stops producing urine and amniotic fluid decreases, usually leading to death. The recipient gets increasingly high blood pressure, develops heart failure and also usually dies. The death of one twin usually results in the death of or injury to the other.

During the two surgeries on Greyson and Sawyer, maternal-fetal medicine specialist Stephen Emery, director of the Fetal Diagnosis and Treatment Center at Magee, found as many of the connections as he could and blocked them by burning them with a laser. Between the two surgeries, the donor twin and recipient twin had reversed roles, causing the occurrence of new vessels and the need for the second procedure.

Laser surgery, done by highly trained subspecialists in only 15 medical centers in the nation, is statistically the most successful way of treating TTTS, with a survival rate of 70 to 75 percent, Dr. Emery said. There is an 8 percent chance of neurological impairment.

The fetuses and Ms. Lendyak-Peters came through the surgeries fine. The next goal was to get the twins further along in development before delivery. "We hoped 30, 31, possibly 32 [weeks gestation]. We were unlikely to get to 34," Dr. Emery said. Full-term gestation is 37 weeks.

Unfortunately, Ms. Lendyak-Peters went into labor at 29 weeks. The babies were delivered by cesarean section on Aug. 1 -- the second wedding anniversary for her and her husband, Ryan Peters -- and hurried off to Magee's neonatal intensive care unit, where the third medical miracle occurred.

"The odds of survival at that gestation are almost 100 percent at this institution," Dr. Emery said. "What you worry about is long-term consequences such as central nervous system problems, breathing problems, gastrointestinal problems."

The twins, put in separate NICU bedrooms after birth, were hooked up to oxygen, intravenous lines, feeding tubes and various monitors.

Sawyer weighed 3 pounds, 1 ounce and was 153/4 inches in length at birth. Greyson weighed 3 pounds, 4 ounces and was 163/4 inches long.

"Greyson had a rough start, but Sawyer had a rougher start," Ms. Lendyak-Peters said.

In the middle of the night following their birth, she was awakened by someone saying something had happened with Sawyer. But by the time she got from her room to the NICU, the crisis had passed. "I made the decision I didn't want to know [what it was]," she said. "Something they did with him helped, and thank God that it did."

She was anxious to hold them both at the same time but didn't get to do that until they were about a month old. In the NICU for what amounted to a full nursing shift every day, she also said "I wanted to hold them 24-7." But because of their prematurity that wasn't possible, "so I had to settle for a couple hours."

"It's like Dr. Emery says: He got them to 29 weeks and NICU got them to where they are now," Ms. Lendyak-Peters said.

"We almost lost them when I was carrying them," she added, "and then it was NICU ... keeping them alive."

The twins were discharged from Magee on Sept. 26. Then they went to The Children's Home of Pittsburgh's Pediatric Specialty Hospital for another 10 days.

"They didn't need a NICU setting anymore ... but they weren't ready to come home yet," their mother said. "The first two months we had doctors around all the time ... going to the Children's Home seemed like a nice middle step. The nurses are like teachers who teach you how to react to alarms and that kind of stuff."

The twins went home to Verona on Oct. 6. Sawyer was still on oxygen and various monitors at night -- but not for long.

His mother said he actually disconnected himself from his oxygen, pulling out the tube when she was getting ready to do the same, an example of why one of his nurses called him "Pistol Pete."

The babies have been thriving ever since they left Magee. When they were weighed in mid-November, Greyson was just under 11 pounds and Sawyer was just shy of 10 pounds. They are handsome, rosy-cheeked, plump-looking babies who can raise holy Cain when they want to. "They're both hearty as hell," Ms. Lendyak-Peters said.

"As far as I know right now they're two healthy babies."

Pohla Smith: or 412-263-1228. First Published December 5, 2011 5:00 AM


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