New Warhorn Media post by Nathan Alberson:
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Thank you for laying all this out so clearly. It hits close to home for us with our William having a serious genetic condition (1p36 deletion syndrome). The worst part about talking to the genetic counselor the day we got his diagnosis was the way they callously suggested that if we had more children we could consider prenatal testing options, including Preimplantation Genetic Diagnosis IVF. The counselor didn’t bat an eye while she explained what the process would entail- “discarding” the embryos that would be like our sweet boy. So tragic. Getting his diagnosis was hard, but a relief. Hearing all of that garbage about our “options” was so heartbreaking. It was the thing the pushed me to tears that day more than the diagnosis itself.
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That sounds awful. Sorry to hear about it.
This is obviously not analogous but … we have a baby coming and one early ultrasound showed it as being severely underweight (everything is fine now, thank God), so we found ourselves talking to a genetic advisor who circled around “options” without ever quite saying what all she meant.
The thing about her was that she didn’t act callous–she acted guilty. She talked fast and apologetically, kept interrupting herself, and avoided eye contact. We didn’t do anything much to induce guilt. It felt like she just carried guilt around with her, almost accepted it as part of the job. It made me wonder how many of here there are out there. I feel like I’ve met more than one.
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That’s interesting and not too surprising, because we’ve definitely had some varied experiences dealing with genetics. We switched providers/health systems around that time and our current experience with genetics has been much better overall. I still find myself thankful that we didn’t have to interact with them at all when I was still pregnant, though. While in some ways it would have been helpful to know William’s diagnosis ahead of his birth (we found out when he was 14 months), I know it would have been so difficult to have those conversations beforehand.
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