Jessica Johnson, 36, from Canyon Lake, Texas, has delivered a healthy baby boy despite life-threatening risks from Marfan syndrome, a rare genetic disorder affecting connective tissue and the heart.
Earlier in the year, Jessica was diagnosed with two aortic aneurysms. These dangerous bulges in her aorta required urgent attention. Days later, she learned she was pregnant with her first child.
“The news was overwhelming. I needed aortic surgery, and now I was pregnant. It was intense,” she said.
Jessica sought prenatal care but was turned away by several doctors who feared she would not survive the pregnancy. Her brother, who also had Marfan syndrome, had recently died from an aortic dissection, making her situation even more urgent.
Determined to continue the pregnancy, Jessica was referred to Dr. Rana Afifi, a vascular surgeon at UTHealth Houston, who specializes in complex aortic diseases in pregnant women.
“Jessica needed specialized care immediately. We had to evaluate her risks and create a careful plan,” said Dr. Afifi.
Jessica and her husband traveled to Houston, where they met Dr. Afifi and Dr. Baha Sibai, a high-risk pregnancy specialist. For the first time, the couple felt fully supported.
“The team promised they would do everything to protect both me and my baby,” Jessica said.
After months of close monitoring, Jessica delivered her son, Damian, via cesarean section on October 21, 2023 — two months early. Fortunately, her aneurysms had not grown larger after delivery.
Dr. Afifi explained that aortic size can change during pregnancy, increasing the risk of rupture. Continued follow-up is essential even after birth.
Jessica, now living in Utah, uses a wheelchair due to bone deterioration. She will continue returning to Houston for heart monitoring and possible surgery if needed.
Despite her challenges, Jessica remains positive. “Raising a child while in a wheelchair is tough, but I’m in a good place mentally. Damian is a miracle, and I’m taking it one day at a time.”
The family is awaiting genetic tests to see if Damian has inherited Marfan syndrome.
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