If you or your child/relative or friend has just been diagnosed with Ebstein’s you may feel bewildered, anxious and probably know very little about this condition. Please use this section of the forum to ask for help and support from others who are a little further down the road (but who can still remember what it feels like to stand where you are now).

My babygirl, Ellie, was diagnosed with Ebstein’s in utero about 3 days before her due date. She was born via emergency c-section. She spent a few days in the Neonatal Intensive Care Unit for monitoring and an eating issue. Now, at almost 10 months, she is just like any other baby. Her cardiologist prescribed her Enalapril. I have done some reading up on the medicine and everything looks good. What I was wondering is if we should limit her sodium and cholesteral intake. Any information would be helpful.

Hi,

My name is Emma and I have a small school on the island of Koh Samui in Thailand.  One of my students, a little boy called Rino, has just been (after literally years of doctors telling his family he would grow out of it) diagnosed with Ebsteins.  He saw a specialist in Bangkok who told him he will need surgery within a year.  His parents don’t have any insurance and the operation will cost somewhere in the region of 2 million baht, or 40,000 pounds.  We are setting up a website for him and are starting to organize fund raising events.  The reason I am putting this post up here is to ask for ideas and help.  He is an amazing little boy and I have come to love him very much over the last five years that I have known him.  He hasn’t had the easiest of lives and it breaks my heart to have to see him now go through this as well.  Any ideas will be gratefully received and when we have his blog set up I’ll post details of that too.

Thank you, Emma

I am a first time Mum, and we were told our baby girl had Ebsteins the day before she was born.  Although we actually had had an abnormal NT at 12 weeks, and went ahead with an amnio which was normal.  We proceeded with a detailed u/s and echo at 20 weeks and were told that our baby was completely healthy.  We were soo relieved!!  It wasn’t until I went overdue and had a routine  u/s to check the fluid was it noticed that she had a heart defect.  We were devastated, and shocked wondering how it could have been missed.  Once it was diagnosed, I was induced so that she wouldn’t be born over the weekend, to maximize the resources available for her.  After a very quick labour, Sydney was born screaming away.  She needed no immediate interventions, and I got to cuddle her before the nursery team took her to the PICU for observation.  She spent a few days in the PICU, and needed no intervention besides oxygen as a pulmonary vasodilator.  We then spent a few days on the cardiology ward in the children’s hospital before being discharged home.  She as acted like a regular healthy baby!!!  She is now two months old and doing great.  She weighed 7 lbs when she was born, and has since doubled her birthweight.  I hope and pray that she stays healthy (and happy!) her whole life, and that more research is done regarding Ebsteins Anomaly.

We were just diagnosed yesterday. My daughter in law is approx 22 weeks with our first grandchild.  she has an appointment with a cardiologist  on Friday.  so many questions?????  I’ve been on the internet non stop  and this site is the only one I can  understand.  Our grand daughter not only has  ebstiens anomaly there is a possible club foot, extra fluid on the brain and the doctor wants to check chromosomes.  Are these other symptoms or abnormalities apart of ebstiens anomaly? What questions should we ask the cardiologist?

I am looking for some advice as feel very unsure what the future holds! Georgina is 3yrs and was diagnosed in Feb after many trips to hospital. She has been a very sick child and is now under the care of Great Ormond Street. she is seen every 8weeks and things have started to worsen! she has now developed an irregular heart beat. She has been put on medication but I can’t get her to take it (even tried hiding in food). She is very anxious about hospitals and I’am finding it a real battle to do the best for her. Her consultant has said he wants her to take the medication to buy us time before they do the valve repair but he is now worried her heart may be tiring as she has prollonged episods of fast heart rate which they are trying to controll
I was just looking for some who has experienced any of the above and can offer me some help.
Alex x

My wife and I are having our first babies (twins). Last week at the 21 week ultrasound we found out that Baby A has EA. On Friday we went to a pediatric cardiologist for more test. We were informed that it is moderate at this point and that the heart size is about 30% larger then it should be at this point and will just get worse. The doctor’s only give it 10% chance of living after birth. If it goes into heart failure anytime before birth it would then effect Baby B. doctors seem to be thinking that termination is the best option. I have no clue how we are supposed to make this decision.

If anyone has any advice I would love to hear it.

Hi all, we are in New Zealand and my 4 year old son has been recently diagnosed with mild EA. I am trying to learn all we can about this and find any others in a similar situation but as it appears to be so rare there aren’t many out there who I can talk to! Patrick is under supervision of the cardiologists here and he is coping quite well so far. But this is all so new and I spend an awful lot of time worrying about him. He can still run around fairly well but tires easily and I have to work hard to get enough food into him sometimes (unless is chocolate of course!). Anyway, just wondering if there are any others in NZ?