Bringing awareness to Intestinal Malrotation and MTHFR Mya's Law
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I am seeking awareness for MTHFR as well awareness on Intestinal Malrotation. We lost our daughter who passed away February 15th, 2018, she was one month old. Her small bowels flipped unexpectedly one night. I did not know the signs to look for so I assumed she was colicky. By the next morning February 13th she was being rushed to a children hospital for surgery only to find that she had a twisted bowel and when the surgeon untwisted them there were blood clots ( Mostly likely contributed by the MTHFR C667T). We found out February 15th, 2018, that our baby girl suffered a massive stroke causing brain damage.
She had so much more life to live but instead her dad, myself, her siblings, our family and friends are left without her. I feel bringing awareness to these two issues will potentially save lives and other families from having to bury their children. Educating parents and families on what these are and what signs and symptoms to look for can help save lives, as well as, seek medical attention more quickly.
I would like to start with Indiana and making it mandatory when parents have a child to educate and offer to have testing done. If parents do not want the testing, then they can opt out of it, but they must still be educated on signs to look for since it affects roughly 1/500 children. As a parent you must watch videos on shaking baby syndrome and how to properly put your child in a car seat, so why not watch a clip or read something that could also prevent your child's death.
I would love for us to all gather together and make awareness for these issues. Eventually within time I want to not only have parents educated but I would love to have an Intestinal Malrotation Day on the date of January 15th (Her birthday) honor of Mya.
Please Share this and lets help save other families in honor of Mya Nicole.
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