“His Skull Disappeared”: People Are Sharing Rare Medical Conditions That Really Exist, And Wow

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“Ivemark Syndrome. My baby lived for five days. The cardiologist couldn’t even give us the name of the medical condition. I found it out myself two and a half years after my son died. He had a 25% chance of surviving 12 months. Multiple heart surgeries were planned, but he died two days before the first one. He was missing his spleen, so if he had lived, he would have had extra vaccinations. He had 12 ribs on one side and 11 on the other. We knew prior to birth there was something wrong; we just didn’t know how bad until the echo and CT were done.”

“I had the option to terminate my pregnancy, but I chose to give him every chance we could. When he was born, the cardiologist suggested supportive care over surgery, but we were willing to give it a go if we were. One in every 250,000 babies has Atrial isomerism; it’s unknown exactly how many, and there isn’t enough research to know exactly how common Ivemark syndrome is.”

—u/zieaendaire