I was hesitant to post publicly about the trip I made yesterday to Boston for a meeting with Noahs surgeon, Dr. del Nido. But now that Im here, and the meeting is over, I think its important enough to talk about. During Noahs first 3 months inpatient, I had A LOT of disagreements with Noahs entire team on his care. It was literally me against Boston Childrens Hospital. Boston won the fight on how to care for him, and I lost my son as a result. For months, Ive blamed the doctors in this hospital for my sons death.. And I was terrified I was going to walk into our meeting this morning to hear some excuse on why Noah was just too sick to be saved. But instead, I had the conversation I could have only dreamed of having. del Nido emphasized that Noahs story, and my incredible desire for his team to see what I was seeing is paving the way to new treatments for Heterotaxy patients. Pushing them to steer away from passive flow circulations, such as Glenns and fontans, because overall, Heterotaxy children dont accept them well. Its pushed them to see that there is a much bigger picture. He mentioned over and over the impact that my sweet boy as had on this hospital.. And while he knows its devastating that I lost my baby, we learn from experience. And Noah and I made a big enough scene to help make a difference. Nothing is ever really going to ease the pain I feel for losing Noah, but the fact that the number one childrens hospital in the country is using my son as an example of what not to do, and could potentially save a lot of lives as a result, just goes to show how much purpose my sweet boys life had. My heartache will never go away. But my baby will help make medical history, and for that, I couldnt be more proud. I get to call myself his mommy. And he is the definition of a Heterotaxy Hero! ❤️💙
Posted on: Wed, 05 Nov 2014 17:32:10 +0000
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