Hi, our baby boy has just been diagnosed with Ebstein’s.  We live in Sydney, Australia. I had taken him to the paeditrician for reflux as he was very unsettled and upset after feeding. He was also only sleeping very short amounts of time. The paed picked up a galloping heartbeat and so after going for investigation he was diagnosed with EA at 8 weeks. He is now 10 weeks.

The hopsital here hasnt given us really any answers regarding his future and what to expect – they just say that they dont know at this stage and we will have to just monitor him for now. Im really struggling with this and feel so frightened and sad. They have said that he is at the severe end and that its likely he will require help. At this point i see the paeditrician once a week and a hospital check up once a month.

Thats all we have to go on for now which doesnt feel enough.

Any one offer any advice/reassurance/tips…..

Thanks x

 

Hello

 

I don’t know if anyone would be able to offer any advice. I’m 30 and I have suffered with EA since birth. I’ve miscarried several times. My doctor’s always say it is down to my EA. But I have never been investigated for this, until now. I got admitted to A&E last week and met a lovely gynaecologist who is going to help us and give me all the investigate me. We have recently got married and would love to start a family and I am just wondering if there is anyone out there who suffers from EA and has sustained a successful pregnancy. I’m after an information that people feel may help. I am hoping that the more information I can take to see my gynaecologist and cardiologist then the bigger help we have in our fight to have a family.

Thanks

 

Hi,

My son (With EA) has just turned 4 and has had migraines since he was 2. The consultants say it isn’t linked to his heart but how do they know that?   No tests have been carried out and he has at least 2 a month. Does anybody know if heart rate or EA affects migrains? Thank you very much, i hope to hear from you!