CLEVELAND. -- Not all that long ago, being born with a serious congenital heart defect was often fatal. But now, most children born with one are living healthy, long lives. Now, as grown-ups, they want to have babies themselves, which brings on new challenges that one hospital is trying to meet.
Victoria Sines, like more than 1.5 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.
Sines says, “When I found out I was pregnant with Alex, it changed everything.”
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.
Jeff Chapa, M.D., Section Head of Maternal Fetal Medicine at Cleveland Clinic explained, “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.”
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.
Victoria had Alex in the special delivery unit, right next to the hospital’s heart unit, just in case there were any problems.
Spending her last six weeks of pregnancy in the hospital, Victoria learned Alex has Marfan syndrome, too.
She said, “He is the light of my life. He is my miracle. He’s changed everything for me. He’s made everything so much better.”
Thanks, not in small part, to the hospital’s super team of specialists.
Dr. 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.
SAFER PREGNANCIES FOR MOMS WITH HEART DEFECTS
BACKGROUND: Marfan syndrome is a genetic disorder that affects one in 5,000 people worldwide. Marfan syndrome affects the body's connective tissue. These tissues hold all of the body's cells and organs together and provide strength and flexibility to structures such as bones, ligaments, muscles, blood vessels, and heart valves. Because of the tissue complications, many people with Marfan syndrome may have heart problems due to leaks or tears of their aorta (the large blood vessel that distributes blood from the heart to the rest of the body). Complications can cause shortness of breath, fatigue, an irregular heartbeat, or an aneurysm. These heart problems can be very serious and often life threatening.
SIGNS AND SYMPTOMS: People with Marfan syndrome are typically tall and slender and have longer fingers and toes than others. People with Marfan syndrome also may have vision problems which are caused by a dislocated lens in one or both eyes. As well, most people with the disorder have some degree of nearsightedness or myopia. Glaucoma is also more common in people with Marfan syndrome than in those without it. Other features of Marfan syndrome are a long narrow face, crowded teeth, an abnormal curvature of the spine (scoliosis or kyphosis) and either a sunken chest or a protruding chest. Pain in the back, abdomen, legs, or head is also common in people with Marfan. Signs and symptoms of Marfan can be seen anytime between infancy and adulthood but depending on the severity of the disorder it can be fatal early on in life.
MOM'S WITH HEART DEFECTS: It can be a lot more risky for women with heart defects to give birth. Some doctors believe that because the heart has to work much harder during pregnancy, it can be risky for women who have heart disease. Jeff Chapa, M.D., Section Head of Maternal Fetal Medicine at the Cleveland Clinic said, "For instance, your heart has to work about 50% harder, so pump 50% 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." Because Marfan syndrome can cause many heart problems such as an irregular heartbeat, an aneurysm or a tear in the aorta which can be potentially deadly, hospitals are now putting programs in place to help women with heart defects through their pregnancies.
(Source: Jeff Chapa, MD, Cleveland Clinic)
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