Loeys-Dietz syndrome: one family’s story

Learning to live with this genetic connective tissue disorder

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Dr. Rosemary Batanjski knows firsthand about Loeys-Dietz syndrome (LDS), a genetic disorder that affects the connective tissue in the body and often involves the aorta. She was diagnosed with the syndrome, along with many family members, including her own two children, her sister and two children, as well as her father (who died at age 43), aunt and cousin Nik (who passed away at age 31).

Dr. Batanjski’s grandmother also passed away in her late 40s, although a Loeys-Dietz diagnosis did not exist at the time. In fact, the syndrome was identified only 10 years ago. Until the discovery, many Loeys-Dietz patients were thought to have Marfan syndrome, a similar connective tissue disorder. Continue reading

Wrapping up heart month: Three women share their joy, straight from the heart

A look back at how three U-M patients are doing today

As we near the end of Heart Month, here’s a look back at some of the patients who shared their U-M experiences with us in 2014. All three have a story to tell about the joy in their hearts, thanks in part to the doctors at the University of Michigan.

Baby Ethan is thriving

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Baby Ethan, with brother Emiliano, is thriving.

Last May, a special team joined hundreds of U-M employees on the campus of Eastern Michigan University for the American Heart Association’s 2014 Washtenaw County Heart Walk/5K Run. This effort to help fight heart disease and stroke was particularly meaningful for the team named  “Ethan’s Emissaries.”

The 26-member group was walking in honor of an unborn child who had been diagnosed with hypoplastic left heart syndrome, a rare condition in which the left ventricle of the heart is severely underdeveloped. Ethan was born May 22, just 12 days after the walk in his honor.

Today, according to his mother, Betty Esquivel, a medical assistant in U-M’s bone marrow transplant clinic, he is thriving. As expected, Ethan has faced several operations, including surgery four days after birth for a heart shunt and again five months later to remove the shunt, which he had outgrown.

Betty says Ethan requires extra precautions to keep him from getting a cold or virus, which could affect his heart. Otherwise, he’s doing even better than U-M doctors originally thought. “He’s gaining weight and isn’t too far behind in his development,” Betty says proudly.

Betty, her husband Andres and their two-year-old son Emiliano have welcomed Ethan into the family with open arms, thankful for the joy this special child has brought to their lives.

Read more about Ethan’s story. Continue reading

Ascending aortic aneurysm patient is back to living

Two-time survivor shares her story and artwork

Lori Eslick blog

Lori Eslick enjoys plein air (open air) painting.

Lori Eslick had her first aortic root aneurysm repair in 2009 at age 49. As a regular runner and active mom, she had no symptoms related to the ascending aortic aneurysm that was growing. Her heart issues began as a newborn when she was diagnosed with a heart murmur and bicuspid aortic valve disease (a congenital abnormality).

When she became pregnant at age 39, a preventive EKG revealed no additional heart concerns. Then, 10 years later, another routine EKG ordered by Lori’s new general physician detected a problem that ultimately led to the diagnosis of her ascending aortic aneurysm. Her doctor recommended she go to the University of Michigan.

Lori was first seen by Dr. Himanshu Patel in November 2009 and underwent aortic surgery later that month. After her surgery, Dr. Patel and his team kept a close eye on Lori’s condition, examining her on a regular basis. Then, four years later, a second aneurysm was discovered just below where her previous aneurysm had been repaired — again with no outward symptoms. Continue reading