Any help or tips welcome

[JamesPreston]

Myself and my wife have a now 2 month old daughter when she was only 24 hours old when completing her going home checks she was found to have be in SVT. Within the first two months we have had multiple trips to hospital and are under Alder Hey for cardiac consultation. Our daughter has been diagnosed with Wolff Parkinson white syndrome and is on Propranolol and Flecanaide to reduce the number of SVTs. We are currently having an episode every week to couple of weeks. We live about an hour and a half away from alder Hey in south Cumbria and don't know of any local support groups or help around. Any help appreciated 😊 thank you in advance.

[DD13]

I can't tell you a lot, but my daughter was diagnosed with this only a few years back in her 40s. I was diagnosed in 2018 with a heart birth defect myself, and I am now in my early 60s. But even though a shock for both you and your partner, it has been found, and your daughter is being treated early. Best wishes for the future. Come back and let us know how she and you both are doing.

[Deejay62]

Hi so sorry to hear this. I had SVT as a child. I just felt it was normal and everyone had it until when I was 15 it started and wouldn’t stop so I told my parents who were in shock and called an ambulance. I ended up on a drip and was given digoxin and later propranolol and as a teenager at the time I was told I could never go on the pill 🥴. I am 62 now and things have progressed

At least your baby have you both and you have medical support. Things have changed a lot. I don’t know much about wolf parkinson white syndrome. I was told at one stage as an adult I might have that but that changed quickly when I was diagnosed with something else which runs in my family

Hopefully someone will come along who can steer you to a group who are going through the same as you. The BHF nurses might be able to help you.

[JamesPreston]

Hello, thank you to those who responded. We had a tough week before going to Alder Hey as our daughter had 3 SVTs within a period of 5 days including the morning of heading for our consultant appointment. We had to have an ambulance transport our daughter from Lancaster hospital to Alder Hey. The appointment only lasted 15 minutes and we have had her medication upped by 50%. They have upped her Flecanaide to 3ml twice a day and her Propranolol to 3.75ml three times a day. We have been told that they do not plan to look at doing an ablation until 6 or 7 years old. Again any help from the BHF nurses or anyone else with any experience would be great as we feel a bit like we are just about managing. Thanks in advance.