Dear Michigan Newborn Screening,
Please reconsider your decision to keep your congenital hypothyroidism TSH cutoff at 33. According to the most current AAP update on the management and screening for congenital hypothyroidism, at least 10% of all permanent CH cases have newborn screening values between 10 and 40. Of that 10% – how many babies do you think receive appropriate care and follow up? Well, we know for sure that in Michigan 0% get a follow up call from their doctor because you don’t reveal the lab values on your result letters for #CH.
Two Michigan babies were born on the same day as our son, Micah, with the same newborn
screening value (TSH =30).
How do I know this? Exactly 1 year ago, this information was given to me by none other than the Michigan Newborn Screening laboratory. However, due to privacy laws, they could not give me the names or information on those two other babies. I’ve been so sick over the fact that there are 2 other children out there who may be suffering like Micah did.
Why is this so important?
I was assured in Feburary of this year that the algorithm would be changing. Then, unfortunately, the kind gentleman I was communicating with at the lab had to go on permanent medical leave. After his departure, I followed up again in June only to discover you changed your mind. Furthermore, your department has made it clear they will not be contacting or following up on those two babies nor will they be lowering their cutoffs or changing their newborn screening algorithm in to prevent future babies from being left untreated.
Truth is, my son isnt getting any younger but isn’t growing much taller either due to his delay in treatment. Oh and he still doesn’t speak. His brain was damaged and while I can’t reverse this….I am going to continue to push to make this right for the future babies of Michigan.
Thank you for your consideration,
A Mom who will never give up.
Geniuses: How can you help?
Share this post so we can find the families of these two babies born on February 10, 2009 and be sure they are receiving proper treatment for their “mild CH.”
Also, maybe this will get the attention of someone in Lansing who also cares about Michigan babies and who believe #MichiganNewbornsDeserveBetter
#CH #NeverWaitAndSee #autism #nonverbal