When we found out about Hart's chromosomal defect, we asked about organ donation. Because his trisomy 18 affected every cell, he was not a candidate for donation. Being a science girl, I pressed on-it felt very important. I asked if it was possible to donate tissue for research purposes. Fortunately, our outstanding genetic counselor was willing to research to see what we could do. To my surprise, there weren't many options, but The University of Miami was able to take a donation of brain tissue in order to further their research into chromosomal anomalies.
When it came time for the doctors to procure the tissue, we ran into a problem. They were unable to take tissue donations without an autopsy. Because it was so important to me, I became emphatic that if they needed to do an autopsy, then they should do an autopsy. I felt desperate to help other families. Hart's lovely doctor (who once even babysat for Hart
❤️) told me that we really didn't want to do that, but asked us to hold on for a bit. He came back a few minutes later and told us that it was taken care of. He had called to get permission to sign an affidavit confirming Hart's diagnosis instead. There would be no need for an autopsy and we could still donate!
When it came time for the doctors to procure the tissue, we ran into a problem. They were unable to take tissue donations without an autopsy. Because it was so important to me, I became emphatic that if they needed to do an autopsy, then they should do an autopsy. I felt desperate to help other families. Hart's lovely doctor (who once even babysat for Hart ❤️) told me that we really didn't want to do that, but asked us to hold on for a bit. He came back a few minutes later and told us that it was taken care of. He had called to get permission to sign an affidavit confirming Hart's diagnosis instead. There would be no need for an autopsy and we could still donate!
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