• Ep. 29 Mother finds out that she also has 22q - Robin Gramke and McKenna's 22q Story

  • Aug 21 2023
  • Length: 41 mins
  • Podcast

Ep. 29 Mother finds out that she also has 22q - Robin Gramke and McKenna's 22q Story

  • Summary

  • Robin and her husband had a beautiful baby girl named McKenna who was quickly diagnosed with 22q. It was recommended by the genetics team to have their entire family tested. After a few months the results came back that her husband and other daughter's test came back negative but Robin tested positive for 22q. She had been living her who life with this deletion syndrome and had no idea. Throughout this episode Robin shares her perspective of what it was like being given this diagnosis at 33 and how she has been navigating her daughters medical and school challenges.


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    Within this episode we discussed:


    • Few hours after birth started shaking due to low calcium and had a seizure.

    • Genetic testing confirmed that Makena and Robin both had 22q

    • First open heart surgery 7 days old.

    • Conduit malfunction, which needed another open heart surgery.
    •  
    • NGTube

    • 18 months needed Oxygen

    • Bronchoscopies 

    • GTube

    • Aortopexy heart surgery

    • School and placement in a typical classroom or Self Contained


    If you would like to contact the 22q Podcast with any questions, comments or if you are interested on being on this podcast email Becky at 22qpodcast@gmail.com. Don't forget to subscribe and share this podcast to help raise awareness about 22q. And never forget 22q family that YOU are not alone.

    Instagram - @22q.podcast

    Facebook - @22qpodcast

    Email - 22qpodcast@gmail.com

    #22qpodcast


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