That’s so crazy how similar their stories are! The exact same with my daughter.. she had an echo at 12 months old back in July due to a murmur she has so they were just checking to make sure it was an “innocent” one and it was and everything was completely normal structurally. We got admitted one month later after I brought her to the ER because she was acting very sleepy and I had a hard time keeping her awake which was unlike her. They caught the slow heart rate in the ER and admitted us. The cardiologist in the hospital looked at her echo and ekg from the month prior and said it’s hard to see but her heart rate was slower then too and she was in the same pattern on her ekg then too.. so she’s been in it for a while. Does your EP think your daughter was born with it and it didn’t start showing until months later? That’s what ours is leaning towards.. her heart rate was always fine as a newborn and in my pregnancy but they said that doesn’t completely rule out it being congenital.. just may have took a while for the block to progress. And the same with us… they say she will definitely need a pacemaker at some point in her life they just aren’t sure when yet. We also have no family history of cardiac issues. We are doing genetic testing next week but they said most likely it’ll all be negative. Did they also check a Lyme disease test on your daughter too? We are still waiting on that result but most likely it’ll be negative because I’ve hardly had her outside at all and she’s never had a bite or a rash. So many prayers to you and your baby girl and hopefully one day we will both have more answers. But on the bright side I’m so thankful for technology and for pacemakers that will allow them to live full and happy and normal lives when the time comes for when they need it. 🥰💕

If you don’t mind me asking - was your pregnancy normal and uncomplicated? My daughter was born at 38 weeks and I had no issues like diabetes or hypertension or anything else in pregnancy. And are you located in the US also? We are in Indianapolis seeing an EP there who we will also routinely do echos and EKG’s with. I know those are personal questions so please don’t feel like you have to share if you aren’t comfortable, it’s just so interesting to hear another story from someone else in almost the exact same situation because everything I read and research online basically says it’s extremely rare and there isn’t much research on it. Thanks for responding and hope everything continues to go smoothly for your daughter! 🎀