Day -8 in the books – was pretty much exactly like day -9. So instead of hospital updates, I’ll update you on the fact that NC recently passed a new legislative budget that includes funding for the addition of several more federally-recommended newborn screening tests on the current panel, one of which is MPS-1.
There was a pilot study to support this effort that ended March 7, 2017. Maggie was born March 9 – so had she been born 2 days earlier, we would have known her diagnosis at birth and she would have been transplanted much sooner and babies that get transplanted sooner do better (she is still young though and diagnosed at favorable age, so I think she’s going to do great). But this disease is ideal to be included on the newborn screen, since it is asymptomatic at birth and there are known disease-modifying interventions. So I’m glad to see NC is at least somewhat catching up with federal recommendations on newborn screening.
And here’s your Maggie pic of the day: