Our son , John Hart Mack, was born on 2/15/22 with 10 fingers, 10 toes, beautiful blue eyes, the blondest hair, and a long chromosome 18 and a short chromosome 5! Not only does he have Partial Edwards Syndrome, he also has Cri du Chat. From what we’ve been told, his dual conditions are so rare that our geneticists can’t find one single person with the same dynamic duo!
John Hart was in the NICU for 70 days after he was born. We found out that he had a small jaw, which was causing severe sleep apnea, so he had a jaw surgery to pull his jaw forward. Although he knows how to take a bottle, he had to have a feeding tube placed because severe apnea, a major jaw surgery, and terrible reflux all left him totally uncomfortable trying to feed.
John Hart came home from the NICU after 70 days and did great for a few months. Then in July, he was diagnosed with COVID and prescribed a cough medication by his pediatrician to help treat it. Within a few hours after receiving the medication, he coded and was dead for 40 minutes. We were told they may not get his pulse back (but they did), and that he may have no neuro capabilities (which he does). He is now 7 months old and trying spoon feeds, attempting to crawl, rolling over on occasion, and finally holding his head up all on his own! He has a little residual movement issues with his arms from brain damaged sustained during his code, but we’re hoping that with time and therapy he’ll be back to moving 100%!
This boy amazes us every single day of his life! He has surprised all of his doctors with his abilities! He’s not quite there with some milestones, but we are sure that with time and therapy he will continue to improve! He’s got the sassiest personality and sweeter disposition! There’s no one like him, and we’re so thankful we were blessed enough to be chosen to be his parents!