Ashley Orosz was 14 weeks pregnant with twins, and something didn't feel quite right.
The Hastings resident went to her doctor and complained of pain, and asked if the doctor could tell her if she was having identical or fraternal twins.
The doctor told Orosz, 29, to "wait until they're 6 months old and see if they look a like."
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Ashley Orosz holds her twin boys together for the first time in the Natal Intensive Care Unit at Conemaugh Memorial Medical Center, Johnstown. They were 3 days old. When Orosz was 14 weeks pregnant with twins she felt something was not right. During?second opinion, another physician diagnosed her with Twin to Twin Transfusion Syndrome which causes twins who share a placenta to become endangered if their shared blood distribution becomes uneven. It can cause death in severe cases if not caught early.
Little did Orosz know at the time that the early answer to that question potentially saved one or both of her twins' lives.
Seeking a second opinion, another doctor diagnosed Orosz's twin boys with with Twin to Twin Transfusion Syndrome (TTTS).
The syndrome, which causes twins who share a placenta to become endangered if their shared blood distribution becomes uneven, affects about 6,000 babies a year and can cause heart failure, anemia and death in severe cases that aren't caught early.
When Orosz was diagnosed at 21 weeks pregnant, her TTTS was at stage two out of five, with stage five being the death of one or both babies.
Her unborn son Blake, called the "recipient" twin, was visibly full of fluid and had a struggling heart, while her son Carter, the "donor" twin, was so small he had no visible bladder.
Orosz was also so extended she measured as if she was 30 weeks pregnant.
"I could tell," she said of the feeling that something was wrong. "When you're pregnant with twins, you have so many ultrasounds it's like you know what's going on."
After being diagnosed, Orosz was immediately referred to Children's Hospital of Philadelphia to have a laser surgery that separated her twins' eight shared blood vessels. Though the risky surgery later caused Orosz to have the babies premature, Blake and Carter are now 2 years old and show no lasting symptoms of TTTS.
Her story is a happy one, but Orosz has taken it upon herself to become a local and national advocate for TTTS awareness.
"It's so unpredictable," she said of the syndrome. "It's a complicated disease. It's emotionally and physically draining on all accounts. ... There are doctors out there that aren't aware or familiar with it. Some don't even believe that it's real."
Mary Slaman-Forsythe of Bay Village, Ohio, who founded the Twin to Twin Transfusion Syndrome Foundation knows first-hand how skepticism about TTTS can have everlasting effects. Slaman-Forsythe became pregnant with twins in 1989, but her son, Stephen, passed away at 26 weeks from what she believes was TTTS.
At the time, her doctors told her there was nothing they could do.
"What I really found out was that the surgery Ashley had, I probably would have been the second in the world to get it," she said.
In honor of Stephen, Slaman-Forsythe started the foundation with the goal to unite mothers of twins in knowledge so that more babies can survive.
"It's a very devastating experience to go through," she said. "You don't want to go through it alone like I did."
Slaman-Forsythe would tell any mother of twins to make sure that they ask a very important question as early as possible: Is there one placenta or two? She also said twins should get weekly ultrasounds from when a mother is four months pregnancy through delivery, preferably by a high-risk doctor who knows the signs of TTTS.
"It can be treated," Slaman-Forsythe said of TTTS. "Babies can be normal and healthy, and there is tremendous hope."
Orosz connected with Slaman-Forsythe the day she received her diagnosis. They both attended a conference in July in Cleveland that brought together mothers and fathers who had been affected by TTTS, as well as doctors who were pioneering surgeries and other treatments for the syndrome.
Orosz said it's been very emotional for her to watch Blake and Carter grow up healthy, and she's glad she's been able to give something back.
"My children are miracles," she said. "Those two have showed me more strength in their little bodies than I've ever seen."
Mirror Staff Writer Beth Ann Downey is at 946-7520.
