Musings of a Marfan Mom

Jess & Brody’s Story

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I met Jess online, as Brody is not much older than Baby J. She shares her story of Brody’s diagnosis below.

Brody was born on aug 13, 2010 after a stressful 24 hour delivery. Upon birth, the doctors noticed his long fingers, toes and indented chest. His breathing wasn’t quite right so an echo was performed. The head pediatrician came to us and told us our newborn may have Marfan syndrome. After an emotional 24 hour labor, my nerves were already peaked. To hear that our first born may have a syndrome we had never even heard of was devastating. Brody spent 5 days in the NICU. After meeting with doctors and researching Marfan syndrome while sitting with Brody in the NICU, we learned a bit about this condition that would affect our child the rest of his life. Neither my husband nor myself have the gene for Marfan. After genetic testing on all 3 of us, we learned it was a spontaneous mutation starting with Brody. Also, that his strand affected was only the second time in the world this particular one has ever been reported. His aorta continued to grow while we did echos every 3 weeks. At 6 weeks old he was life flighted to a children’s hospital an hour away. It was the longest drive of my life. We finally got to the hospital. Brody was acting fine but his heart rate would randomly shoot up to 280. We spent a week at KU Medical Center’s pediatric intensive care unit. Day 3 we started losartan. We got to go home after a week but we were told by the pediatric cardiologist to expect the worst with Brody because of his aortic growth: “He may not live to his first birthday.” More devastation. But things got better. It took 2 months, but the losartan seemed to slow his aortic growth! In February, there was no growth from the previous echo! So now we return in June. Brody has been the biggest blessing of my life. I have become such a better person. But challenges are still ahead. We need more research to find ways for him to have a better, easier life.

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5 Comments

  1. Brody is darling. I’m so happy losartan is helping him. Thank you for sharing your story.

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  2. Marfan is such a hard thing to live with… but not impossible. I wish the best for the family and little brody. He is so handsome. Its so cool the similarities us marfan people share and most of us aren’t even related. Best of luck. 😀

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  3. Sweet baby! He has glasses just like my little boy.

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  4. When my little boy was born, they thought he had Marfans and he looked very much like Brody as well. He ended up not having marfans, they don’ t know what he had, and he only lived till 8 months old. But we were very blessed to have him if only for a little while. Brody on the other hand, is going to have a wonderful life ahead of him. Our thoughts and prayers are with you all.

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  5. Voglio dire ai genitori di Brody di avere tanta fiducia.Quando nacque mio figlio pochi medici conoscevano la sindrome di Marfan ed è stato difficile trovare specialisti per ogni problema,noi eravamo molto soli.Ma oggi non è più così,Brody avrà tutta la competenza dei migliori conoscitori della sindrome.
    Il mio bambino adesso è un uomo di 35 anni!Lui è felicemente sposato con una dolcissima ragazza.
    Auguro di cuore una vita felice a tutta la famiglia.

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