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Huntington couple overcomes rare circulation syndrome in their premature twins

When she was 18-weeks pregnant, Dana Salmonese found out that her twins suffered a rare condition called Twin-to-Twin Transfusion Syndrome. At home with her husband Joe and their now 4-month-old twins, Dana talked about the trials she went through during her pregnancy. Credit: Newsday / Alejandra Villa

Dana Salmonese had gotten past the first trimester of her pregnancy and felt comfortable sharing the news on social media that she and her husband Joe were expecting twins.

"You think that you're in the clear after the first trimester and you're safe announcing on Facebook," said Dana, 30.

But things soon went awry for the Huntington couple in a chain of events that included a diagnosis of a rare syndrome that creates an imbalance in the circulation the twins share.

"My story starts at week 13 when I had a subchorionic hematoma hemorrhage," Dana said during a Zoom interview Wednesday. "It was the middle of the night. I had just announced my pregnancy on Facebook. And I was bleeding...I was like, 'Joe, we need to go to the ER. I'm miscarrying.'"

While in the emergency room that night at Huntington Hospital in mid-February, "I was still getting congratulations on my Facebook post," Dana said, "meanwhile I'm in the ER having a miscarriage," she thought.

Instead, though, "we saw two heartbeats that day, which I was so thankful for. But the doctors did tell us that the babies had a 50% chance to live, at that point," leaving her feeling "empty" and "gutted."

Dana, a substitute teacher and graphic designer, didn't lose the babies--they were delivered June 5 by Cesarean section two months premature-- but it was the beginning of a harrowing journey that saw other medical setbacks in her high-risk pregnancy. It meant in-utero surgery to save the babies; and her water broke at 20 weeks in her pregnancy, another time she thought she'd lose them.

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But they ultimately were able to bring their "miracle babies," Paul and Vince, home to Huntington. Vince, the bigger of the babies, on Aug. 20, and Paul, Sept. 18, said Dr. Nazeeh Hanna, chief of neonatology at NYU Winthrop Hospital in Mineola.

Hanna said "the MRI we did was very encouraging...It was normal by the time they went home and we’re very optimistic they will do well." He said they had "two hits" against them: being born premature, and having had a rare condition, Twin-to-Twin Transfusion Syndrome, which required surgery while they were still in-utero.

"We are going to follow them in our follow-up clinic to measure their development to make sure they hit milestones."

Dana and Joe Salmonese said their faith brought them through. "I want people to know trust your faith," Dana said. "Trust in God. He will get you through the darkest of your days...I prayed every day. I said on the Today Show, 'Don't tell God how big your storm is. Tell the storm how big your God is.'"

The couple was featured on the Today Show on Wednesday, and in a People magazine story in August.

Doctors determined in March surgery had to be performed quickly. Dana was referred to Dr. Martin Chavez, director of maternal fetal medicine and fetal surgery at NYU Winthrop Hospital in Mineola, part of NYU Langone Health, which he said is the only hospital on Long Island that does the in-utero surgery to correct the Twin-to-Twin Transfusion Syndrome.

Chavez said the syndrome involves "an imbalance in the circulation between two identical twins...where you have one placenta shared between two babies in different sacs...One baby is getting too much. The other baby is not geting enough" oxygen, nutrients and blood flow from the placenta. He said there was an 80% to 90% risk of "losing one or both" of the babies without treatment and the surgery provides "hope."

"This was right before the peak of COVID," Chavez said. "Our hospital systems were now getting full and we did the procedure and approximately two weeks later she had another complication, where typically we might have wanted to consider admitting her. But after long discussions with Dana and Joe, we decided that we were going to take a very novel approach and actually combine telemedicine as well as actual vists to try to minimize her exposure" to the virus if she stayed at the hospital.

Dana said "COVID had such a tight grip on our neighborhood," and turning to her first-responder husband, added, "He was terrified to bring it home to me." The couple also have a 22-month-old daughter, Gianna.

Dana said her husband "would change [clothes] in the garage. He'd go straight into the shower."

"It was definitely stressful," Joe, 30, added. "I was around these people that were positive for COVID." He praised the precautions the firehouse took, with the personal protective equipment and sanitizing of equipment and gear. He is a volunteer firefighter as well as an E.M.T. with the Greenlawn Fire Department. He also works for the Greenlawn Water District.

"Not only is he a hero in his community," Chavez said of Joe, "but he's a hero to us and he's a hero to his family."

Insurance has covered most of what Joe said was nearly a $5 million medical bill, "but there are deductibles." "These are expensive babies," Joe said, smiling. The couple are raising money through gofundme.com/salmonesetwins to cover some costs. But Dana added they want to donate some money to Twin-to-Twin Transfusion Syndrome Foundation and for research NYU Winthrop's neonatal intensive care unit is conducting.

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