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Marfan Syndrome Poses Significant Risk To Women During And After Childbirth

NEW YORK (CBSNewYork) -- Pregnancy and childbirth can be two of the most joyful times in a woman's life.

As CBS2's Dr. Max Gomez reported, one young woman faced the possibility of being killed by both, but modern medicine kept her alive.

Believe it or not pregnancy is one of the riskiest medical conditions that healthy women can ever go through.

Add in something called Marfan Syndrome, a genetic condition that weakens the spine, lenses of the eyes, the heart and the aorta, and you have a possible disaster on your hands.

Kennedy Jordan is three-weeks-old and was delivered prematurely, but is doing just fine.

Things could have gone differently for Asia Jordan. Asia has Marfan Syndrome, a genetic disease she inherited from her mother.

Marfan patients tend to grow very tall with multiple orthopedic issues. Asia has had rods put in her back to straighten severe scoliosis, but it's what Marfan did to her heart that is most concerning.

"She had two open heart procedures before. She had aortic root replacement, and her aortic valve was left in place, and then she had a second more complicated procedure where they had to get inside the heart," Dr. Ali Zaidi explained.

Doctors had strong advice for Asia.

"Their recommendation was probably not to get pregnant, and if I decide to get pregnant, to be planned, and Kennedy was not planned," she said.

The reason for the advice?

"Her risk for mortality was very high, was at least 50 percent, if not more, and other complications. Our biggest concerns were stroke, heart failure, aortic dissection," Dr. Diana Wolfe said.

It took an interdisciplinary team monitoring Asia to keep disaster from striking her and her unborn baby. Pregnancy itself increases the amount of blood the heart has to pump, blood pressure, and heart rate change, putting more stress on the already weakened aorta.

Then comes delivery. The rods in her back meant an epidural was impossible, another risk for aortic rupture.

"My job is to keep the blood pressure and heart rate as stable as possible during the delivery," Dr. Jeffrey Bernstein said.

In the end all went well. Asia thanked god, good luck, and good doctors.

"I still look at her to this day and I'm still in awe that this little person was inside of me because my stomach was so small so I was like where was she at, and then when I had seen her, I just couldn't believe it," she said.

There's a 50 percent chance that baby Kennedy will also have Marfan, but she won't be tested for a while.

As for Asia, even after delivery things could have happened with sudden changes in blood, volume, pressure, and more. She'll have to be monitored because her aorta could still continue to weaken.

 

 

 

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