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Coarctation of the Aorta

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This is Olivia's story.

Olivia had issues with her breathing since the second day of birth. The weekend I delivered I had mentioned it to the doctor and to the nurses multiple times. They did testing to clue them in for any congenital heart defect, and the testing came out negative.  Olivia even went to the doctor twice that week to be checked out and we were told her breathing was "normal" and she was just learning how to breathe. It  just got progressively worse as the days passed by.  By the 9th day Olivia was constantly grunting, nasal flaring, and retracting her chest. She was struggling to breath and would refuse to eat, she started to choke from the feeding.  At this time we decided to take her to Kendall Regional for respiratory distress and lethargy.

Olivia was originally being worked up for sepsis and when they intubated her and had to do a follow up chest xray at this point the neonatologist noticed she had an enlarged heart. This is when a cardiologist was consulted and arrived within 10 minutes. She stated she knew exactly what was going on as soon as all the symptoms were described to her. The cardiologist stated that her PDA had just recently closed and the blood flow was trickeling through her aorta. This is when she was diagnosed with Coarctation of the Aorta.  Olivia was in complete heart failure and her lungs were compensating. Olivia had no oxygen flowing from her liver down. 

Coarctation of the Aorta is a rare congenital heart defect that affects 1 in 200,000 and is very difficult to diagnose and seen mostly in boys than girls. This condition usually goes undiagnosed and usually the child dies from shock. The good thing was that it had just closed so she was able to respond to medication quickly. Olivia was started on multiple life saving medications  and put in a medically induced coma. Olivia had to be airlifted to Miami Childrens Hospital for further care. Olivia went into liver failure as a result from the cardiogenic shock and her kidneys started to take a toll. She needed to stabilize prior to surgery  and was prompted for Repair of the Coarctation of the Aorta on Monday afternoon.  Luckily, the surgeon was able to perform a minimally invasive technique by performing a thoracotomy vs open heart. We are now on the road to recovery, but she will need repeat echos, cardiologist visits, and close monitoring for several years. 

At this time, I am on maternity leave and I am the sole provider for our family while Zach is in school. This came very unexpected and I am asking to fundraise money to help us out and ease the burden a little bit so I can focus on her full recovery.  If you would like to donate please feel free, every little bit helps. Even sharing this page would be great. If you would like to leave a message for support, please do so on this page. We really do appreciate it.

Please keep our family in your prayers.
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Donations 

  • Sadie Bosch-bianchi
    • $50 
    • 5 yrs
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Organizer

Becca Bosch
Organizer
Miami, FL

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