Jessica Johnson, a 36-year-old woman from Texas diagnosed with Marfan syndrome, successfully delivered a healthy baby boy despite facing significant health challenges during her pregnancy.
Marfan syndrome is a rare genetic disorder that affects the body’s connective tissue, often impacting the heart, blood vessels, eyes, and bones. Individuals with this condition are at increased risk for aortic aneurysms—dangerous bulges in the main artery that can lead to life-threatening complications if not treated.
Jessica’s journey began when she experienced labored breathing and heart palpitations. A CT scan revealed two aortic aneurysms, indicating the potential need for surgery. Shortly after this diagnosis, she discovered she was pregnant with her first child.
Due to the high-risk nature of her condition, several local physicians declined to take her on as a patient. Amidst this uncertainty, Jessica also faced the tragic loss of her brother, who had Marfan syndrome and died from an aortic dissection.
Determined to proceed with her pregnancy, Jessica sought specialized care and was referred to Dr. Rana Afifi, a vascular surgeon at UTHealth Houston Heart & Vascular. Dr. Afifi, along with Dr. Baha Sibai, a professor in the Department of Obstetrics, Gynecology, and Reproductive Sciences at McGovern Medical School, assembled a multidisciplinary team to manage Jessica’s complex case.
Under their care, Jessica was closely monitored throughout her pregnancy. On October 21, 2023, two months before her due date, she delivered her son, Damian, via cesarean section. Post-delivery tests showed that the size of her aortic aneurysms remained stable.
“Damian is truly a miracle baby,” Jessica shared. “He is hitting all his milestones; he has no physical or mental delays. He is a happy-go-lucky baby, and I couldn’t ask for a better situation.”
Jessica and her family have since moved to Utah. She currently uses a wheelchair due to bone deterioration and hip pain but continues to receive care from Dr. Afifi, traveling back to Houston for regular check-ups.
This case underscores the importance of specialized, multidisciplinary care for pregnant women with complex health conditions like Marfan syndrome. With expert management and support, positive outcomes are achievable even in high-risk scenarios.
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