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Leticia Maia is looking forward to her due date — April 23, 2025. She also is experiencing her first pregnancy alongside managing Marfan syndrome with help from providers who specialize in high-risk patient needs.
“I am very excited to see [the baby on the way], to have her in my arms, to have my time with my family. She’s my first baby so it’s an unknown area new for anybody in life,” said Leticia.
Leticia says of her team of high-risk specialist obstetricians and other expert providers, “I feel very safe with them. I am going to Memorial Regional Hospital in Hollywood, FL. Since the beginning, they have showed me the whole hospital and the whole team for high-risk pregnancy. I [feel] really safe there,” said Leticia.
A Marfan Diagnosis, A Journey from Brazil
Leticia grew up in Brazil, where an ophthalmologist suspected Marfan due to a detachment in her eye.
“It was the main thing that made him think of Marfan for me,” said Leticia. “My Mom thought I had an eye infection.” But the eye doctor saw more. During what her family thought would be a routine visit, according to Leticia her provider said, “Let me see your hands, let me see your mouth, does she have any malformation in her chest or torso?”
Not only did Leticia have pectus excavatum, so did most of her extended family members. She was the first to discover that Marfan syndrome ran in the family, but she wouldn’t be the last. During her teen years, Leticia experienced common Marfan-related issues including scoliosis and problems with her feet. She swam in order to stay physically active, and her mom started looking for a Marfan specialist in Brazil.
“My mom was very desperate to find answers. She started looking for a cardiologist for me,” said Leticia. Leticia also said she faced some cultural barriers. “Marfan syndrome is not something we talk about in Brazil commonly,” she said.
Each individual in her family living with Marfan was affected differently. Her mom had mitral valve problems, as an example. Leticia had some electrical issues with her own heart. A doctor in the United States was recommended. Leticia moved to the US eight years ago, alongside many members of her family.
“Because of me, my whole family discovered they had Marfan syndrome. We didn’t know it was inherited [at first].” Through genetic testing, Leticia learned that her mother and sisters all had the condition. In her family, symptoms of Marfan have tended to be on the milder side with fewer life-threatening complications, according to Leticia. As a result, sometimes Leticia has had her diagnosis questioned.
“People will say, ‘Are you sure you have Marfan? You don’t look like it.'” she said.
The Next Generation
Leticia knows her baby has a 50% chance of also having Marfan syndrome. Leticia is at peace with whatever the future may hold. “If she does have Marfan, I’m fine.” said Leticia. “The good part of discovering things early is medical monitoring. Her fetal echo was fine. After she is 6-months old, we can see if she has something,” added Leticia.
In terms of her own safety during delivery and beyond, Leticia is optimistic, largely because she stays in close contact with a team of expert providers across medical specialties.
“I know how to take care of myself,” said Leticia. “Of course, you feel more scared, you have a different type of body. Knowing that I am different, I don’t know how much different my birth will be. But that is [also] unknown for women [without Marfan],” she said.
“I just want [the baby] to have a healthy life, a normal life. All the doctors for the baby are organized for her [birth],” said Leticia.
The Foundation family wishes Leticia and her family all the best for a healthy delivery.
April Dawn Shinske is the Chief Communications and Marketing Officer for The Marfan Foundation. She is proud to lead a stellar integrated marketing and communications team and honored to help tell the amazing stories of our community members.