Ebstein's Anomaly Support Group

My name is Helen I am currently 37 weeks pregnant and our baby has been diagnosed with medium-severe epstein's anomaly.

We are at our wits end as to know how to cope with this and would love to hear from other parents as to how their child is getting on and how they have managed this condition.

Hope somebody outhere can help.

Helen

I'm in a similar situation as you except I am not as far along. I hope that you find the answers you're looking for, I'm looking for them too.

The best advice I can think of to tell you and your partner at this point is to keep your chin up (we're certainly trying to).

I'm Mary. I'm the group leader for the Congenital Heart Disease (Defect) group here on MD Junction. I was not aware that there was a support group dedicated specifically to Ebstein's Anomaly until one of you posted yesterday, and I came across the post by accident.

We do have another mom in the CHD group that has a 5 year old son with Ebstein's Anomaly. If you'd like, you could join us at the CHD group, too. I know it is hard for you to find advice when the group is still so small.

http://www.mdjunction.com/congenital-heart-disease

A little about me... I have a 10 year old son born with severe congenital heart defects. He had 2 corrective open heart surgeries before he was 2 months old. Today, you'd never know there was ever a problem with his heart! He's my miracle child.

If you feel inclined, please join us, and perhaps, in time, this group will grow, too.

~Mary

Thank you so much for replying to my email. It is just such a roller coaster of emotions isn't it??? I really feel for you and your partner as it is just so hard to take in the news and then try to find information and deal with it in the best way that you can.

Our baby will be delivered on April 1st and will be transfered straight away to a children's hospital that has a specialist cardiac ward. The cardiologist that we met there gave us the worst case senario and she really knocked our confidence and took every bit of positivity away from us but like you say the best thing to do right now is to remain as hopefull as possible and pray that all will work out in the end for both of us.

I am thinking of you and your partner and I hope that we can stay in touch and update each other on our little one's progress.

Take care and thanks again for replying to me.

Helen x-x

Thanks so much for the mail and I am very glad to hear that your little one is doing so well. It must be such a relief and weight off your mind to know that positive progress is being made.

Our baby is due to be delivered on April 1st and will transfer straight away to a children's hospital that has a specialist cardiac unit. The cardiologist that we met there gave us the worst case senario and really took all our confidence away but we are trying to remain positive as we have since met with a paediatrician who will be present at the birth and he told us that he was cautiously optimistic that all would work out. It's hard to know who to believe and who to put your faith in after hearing such bad news.

I hope that we can stay in touch and I will keep you posted on my little one's progress.

Thanks again

Helen x-x

It is an emotional rollercoaster. Being given the worst scenario possible by the cardiologist, plus a couple of other doctors, isn't comforting in the least. But we're trying to be optimistic about it and hoping that she'll be fine.

I hope that everything works out for the best with your little one and I'd love to stay in touch so we can help each other in this difficult time. *hugs*

Take care hon.

I'm glad that your child is doing well. Your child and I have our surgeries in common. I had two open heart surgeries before the age of two and you'd never know it just from looking at me.

Thanks for letting us know about the congestive heart disease (defect) group here on MDJunction

What defects did/do you have? What procedures have you had done? That had to be pretty nerve-wracking for your parents, having so little support, no internet to find information, and surgery techniques still back in the stone-age (LOL!).

Does anyone feel that your child's defect could be genetic or inherited? Or just a fluke of nature (that both you and your child should both have heart defects)?

My son had Shone's Syndrome (fairly rare dx) and "borderline" Hypoplastic Left Heart Syndrome (HLHS), which would have been a death sentence years ago. He had first surgery at 18 days old. He probably would have had it sooner had they KNOWN about it sooner! But, his defect was found at his 2 week check-up. The procedure he had on his aortic arch was cutting edge at the time. It had only been in use for approximately 18 months! They had no children old enough to know how the procedure might turn out. Well, so far, so good!

Anyway...

I had been in contact with Roy (the site's owner) about this group. There is some confusion between "EBstein's Anomaly" and "EPstein-Barr Virus". So, half the people that signed on here are in the wrong group. With only about 1 in 20,000 babies being born with Ebstein's specifically, and 1 in about 115 children born with CHD's in general, Roy MAY disband this group and opt for everyone concerned about heart defects to transfer to the CHD group. It is something that he is pondering right now because (1) there is confusion and (2) there is really no need for a group specific to one type of heart defect when as parents of children with defects we have many things in common, even if the specific defect is different.

So, that's just a head's up for you. We'll see how it plays out. He may decide to keep this one running, too. But I don't know anything specific yet.

Well, we'll keep positive thoughts and prayers in the air for you and your little one!

~Mary

Thanks for the reply to the mail so quickly. Rollercoaster is really the only way to explain it isn't it. We are trying to remain as positive as possible but at this stage my husband is managing it more than me!!

I am trying to convince myself that the docs will know more about what to do when the baby comes out and that maybe we don't have too much to worry about.

When is your baby due??

Well I will keep you updated on progress from April 1st and please god we will all have a positive outcome from this.

Take care

Helen x

My apologees for not having answered your questions sooner. I'll try to answer this in a "nutshell" LOL.

I was born with an Atrial Septal Defect and a Ventricular Septal Defect. My first open heart surgery was at three months old; the second open heart surgery at eight months. (Mind you, this was in 86' and 87') In the first surgery, in an attempt to correct the VSD, they preformed a surgical closure of the isolated ventricular septal with sutures. I responded well but I became very sick a few months afterward. Doctors then discovered the ASD and had to perform open heart surgery a second time and,due to the size and shape of the hole, the doctors closed the hole with a patch.

Until the age of two and a half, I had a nasogastric feeding tube because I became worn out too quickly with feeding and I was unable to maintain my weight. I had an in-home nurse until I was five years old (along with my father) to take care of me during those times.

It was a very nerve-wracking time for my father, as he raised me by himself from one month to thirteen until he re-married. He's my hero and he's one of the greatest fathers a girl could ever, ever ask for. We're very close.

I get atrial arrhythmias and chest pain (about once or twice a month, depending on how active or how stressed out I am) since my surgeries. I have to be pre-medicated with ammoxicillian before having dental procedures preformed to avoid the potential for an infected clot forming where the defect was present. Other than that, I'd say I'm doing well. I've given birth to twins (which I carried one day shy of full term, ah thank you ), played in all kinds of sports during school, played instruments, etc.

At this stage, doctors are trying to discern whether Piper's defect could be inherited from me. While the cardiologist has said that it is a possibility, he has yet to rule out the possibility of it being a fluke of nature due to the rarity of the defect. Only time will tell.

Both Piper and I have echocardiograms scheduled on the twenty-third of this coming month. We should have more answers by then as to how I'm doing, how she's doing and what steps we can take from there to ensure that both of us get through this pregnancy (and the delivery) in the best of health possible.

I'm very happy to hear that your son is doing great so far. *hugs* I sincerely wish him the best of health. Sorry if I didn't answer any of your questions, I sort of forgot what they all were while I was busy being long winded LOL

And, I wanted to thank you for the hugs and the prayer. It means a lot to our family.

Take care,

Chantel