When Jessica Johnson, 36, began experiencing heart palpitations and labored breathing, a CT scan revealed alarming news: two aortic aneurysms that might require surgery. Johnson, who had been diagnosed with Marfan syndrome as a child, was already familiar with the challenges of living with the rare genetic disorder, which impacts connective tissue and can cause serious cardiovascular complications.
But this was a new challenge. Despite having no prior issues with her aorta, Johnson learned that her aneurysms posed significant risks, including the potential for rupture or dissection. In addition to this grave diagnosis, she was stunned to find out she was pregnant.
“The news hit me hard—both the need for surgery and the fact that I was pregnant,” Jessica shared. “It was overwhelming.”
Her situation became even more complicated as local physicians, fearful of the risks, declined to offer her prenatal care due to her high-risk condition. “I saw multiple doctors who confirmed my pregnancy but told me I wouldn’t survive it because of my heart,” she recalled. “It was a helpless feeling.”
Compounding the difficulty, Jessica lost her brother to an aortic dissection, a tragedy she attributed to Marfan syndrome. Determined to fight for her pregnancy, she searched for a medical team that could help.
Her breakthrough came when she was referred to Dr. Rana Afifi, a vascular surgeon with UTHealth Houston, an expert in managing young women with aortic diseases during pregnancy. “I knew we had to act quickly,” said Dr. Afifi, who specializes in complex aortic conditions. “Without immediate evaluation, her condition could deteriorate rapidly.”
In Houston, Jessica met Dr. Baha Sibai, a maternal-fetal medicine expert, who explained the potentially life-threatening challenges ahead. “Her pregnancy would involve constant monitoring due to the risks posed by her condition, but I reassured her that she was in the right place,” Dr. Sibai said.
For the first time, Jessica and her husband felt a sense of hope as the team at UTHealth committed to ensuring both her and her baby’s safety. “We received nothing but support, and that was a turning point for us,” Jessica said.
In the months that followed, Jessica was regularly hospitalized for monitoring. On October 21, 2023, just weeks before her due date, Jessica successfully delivered her son, Damian, via cesarean section, surrounded by a team of specialists.
Post-delivery tests showed that the size of her aneurysms had remained stable. Dr. Afifi emphasized the importance of continued care. “Pregnancy can cause changes in the aorta’s size, which could increase the risk of a rupture or dissection,” she explained. “However, Jessica’s case highlights the importance of individualized care and careful monitoring.”
Jessica’s son, Damian, is thriving, showing no signs of Marfan syndrome, and hitting all developmental milestones. “Damian is a miracle baby,” she said, expressing gratitude for the support from her medical team and loved ones.
Now living in Utah, Jessica faces ongoing health challenges, including bone deterioration and hip pain, which leave her wheelchair-bound. Despite this, she remains in good spirits, continuing her care with Dr. Afifi in Houston. “I will always come back to Houston for my care because I trust my team,” Jessica said. “Raising a child in a wheelchair is tough, but I take it one day at a time.”
Jessica’s journey underscores the critical role of specialized medical care for rare and high-risk pregnancies, showing that with the right support, even the most complex challenges can be overcome.
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