CLEVELAND, Ohio – Victoria Sines, like more than one-point-five million other Americans, grew up with a congenital heart defect. Marfan syndrome caused her aorta to be enlarged. Before she became pregnant, she didn't think she was ever going to be a mom
"When I found out I was pregnant with Alex, it changed everything," Sines said.
It's a good and troubling trend. More women with heart defects survive grow up and want to be moms. It's risky for them and their kids.
"For instance, your heart has to work about 50 percent harder, so pump 50 percent more blood during pregnancy at its peak. So people who've had heart disease, their hearts may not be able to accommodate that extra load, and that's where they can get into trouble," explained Jeff Chapa, M.D., Section Head of Maternal Fetal Medicine at Cleveland Clinic.
The Cleveland Clinic has a program just for them. A team of high-risk obstetricians, cardiologists and fetal medical specialists evaluates moms-to-be, and intensely monitors them throughout their pregnancies.
Sines had Alex in the special delivery unit, right next to the hospital's heart unit, just in case. And, spending her last six weeks of pregnancy in the hospital, she learned Alex has Marfan syndrome, too.
"He is the light of my life," said Sines. "He is my miracle. He's changed everything for me. He's made everything so much better."
Chapa says fear and a lack of knowledge are the two biggest challenges his team deals with. He's working on a presentation that will explain this special team approach to both parents-to-be and doctors alike.