Amid Covid-19, Darcie had her second pacing appointment today at hospital, quite a concern when we haven't left the house for 10 weeks or so, but she had an ECG today and her device checked over and all looks fabulous. She didn't like being back at hospital though and gripped me tighter as soon as we walked through the hospital entrance and cried when she saw the cardiology team - thinking they were going to poke and prod her again no doubt. However, not only is she doing phenomenal, with no new episodes of VT, she's become famous in the medical world...and a lot of experts are lining up to meet her when lockdown is over!
“Darcie is the only under-18 in the world to have heart logic activated on her device - WOW.”
We found out that Darcie is the only baby (and only under 18) in-the-world to have something called 'heart logic' activated on her ICD. So what does this mean? Well, heart logic provides an extra level of monitoring to model and predict when she could have a next VT episode. It measures and monitors several things like her night time heart rate (which is so important for people with Brugada, since that's when most VT episodes and unfortunately fatalities happen), how much fluid is on the lungs and her respiratory rate. With this information, the hope is that it will predict when she has a next VT episode so we can be fully prepped. This really is groundbreaking news and as parents, we are so pleased that Darcie can help other children in the future if this works. Medical staff don't know as yet of course if the heart logic function works in babies/infants, but if it does, Darcie will have made medical history.
"It is hoped Darcie will be able to help other children diagnosed with Brugada in the future"
Wow. We know she's super special, but with this, she's even more of a miracle baby.
Prayers for Darcie and her family!