Svt diagnosed at birth

Hi all My little boy was born on 18th Jan and came out during an SVT episode so he was diagnosed immediately. He was in NICU at our local hospital but quickly blue lighted to Leeds. He stayed there for 15 days to get his medications under control and was put on amiodrone and propranolol. He was discharged home and went 2 weeks almost with no episodes but then started having loads. We’re back readmitted to Leeds hospital and we are so low and feel lonely as we don’t know anyone who’s been through this and come out the other side so feels like we’ll be in the hospital forever. He is a sicky reflux baby so they’re currently trying to introduce reflux meds to help keep his meds / milk down which should help just in case he’d been throwing them up. We have a 3 year old daughter at home who is just heartbroken and just wants her mummy, daddy and baby brother home safely and I just don’t know when that will be. Has anyone else had issues with getting on the right meds? We are so worried that he’ll be having these episodes forever and it’s such a daunting experience. Any help / guidance / experiences to be shared would be so so so helpful!!! Thank you in advance x

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Hi Sami, that sounds really tough what you’ve been going through. We felt really quite isolated and overwhelmed when our daughter was diagnosed with SVT when I was 27 weeks pregnant. Our daughter, Florence, was started on propranolol when she was born and this seemed to keep things under control for a week but she then went into SVT at home. She was in our local hospital for a day or so but they couldn’t get things under control and she ended up being blue lighted to the Evelina children’s hospital. They started her on flecainide and since then her SVT has been really well controlled. Florence was also on propranolol 3x a day too but we were finding she was throwing it back up on quite a regular basis so they changed her from that to atenolol back in October and that’s just once a day alongside her flecainide which she has 3x a day. If you ever want to talk feel free to message. We really struggled with the first couple of weeks after she was born.

It all felt so overwhelming. However she’s nearly 8 months and since they tweaked her meds she’s had no further episodes that we know about and they’re going to try to start weaning her off of her meds in 6 months xx

Hi Sami, hope you’re all doing ok? We had a similar situation with the uncertainty when my little girl was born back in September 2021. She was also diagnosed with SVT when she was born and spent a week in the NICU where they got her propranolol dose sorted. When she was eventually discharged, we were only home 6 hours before she had another episode, and we were admitted to the PICU and then the paediatric cardiology ward where they put her in flecainide too. That seemed to keep things in check for her, and she’s now almost 2 and a half and weaned off of all drugs. It was a slow process to get here, but it does get easier and it becomes your norm. If you have any questions or wanna chat, please just send me a message!