My daughter was diagnosed at the age of 2, and so far the only impact has been annual visits to the consultant. She is now 7 and we are about to go again, and I know she is going to ask more questions. Her father explained last year that she had a ‘squeaky door’ but I am not sure she really understood that, and I don’t think it will suffice this year. I am worried that we need to give her enough knowledge to equip her to be able to tell us/or a teacher if she feels anything unusual. Also, my brother always knew he had a heart complaint and I think he accepted it much more readily because he had ‘always known it’. I am also worried that she may look it up on the internet and find out information which would be risky. At the same time we don’t want to burden her with too much information and make her worry.
Anyone experienced similar debates? How did you resolve them?
Thanks, Caroline
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Hello
I just wanted to say what a great site you have set up, thanks for taking the time to do this. My daughter (now 3 and a half) was diagnosed at 20wk scan and it was so hard trying to get information. Particularly because, as you say in the UK most docs have seen a few cases. Hopefully this site can help.
Cara is now doing really well, takes medicine for arrythmias but otherwise no problems at all. Based on what I’ve read I’ve always tried to treat her completely normally and let her try anything, she knows she has a ‘special heart’ because she takes meds every day and I think its important they are aware of it so that it doesn’t come as a big shock eg during teenage years. I hope that she will learn more about Ebsteins gradually as and when she is ready to take it on board. Cara has not had an arrythmia since she has been able to talk so I don’t know how she would react but I think they would instinctively know something was wrong and be able to communicate this. She has said a few times to me ‘i’m slow’ and ‘i can’t keep up’ – I don’t notice her being particularly slow when running around with other children but she seems to feel it. I’m not sure – its probably a combination of her Ebsteins and an older brother who she will never be able to keep up with!
Comment by Amanda — February 12, 2009 @ 2:42 pm
Hello
My son who is 4 has moderate ebsteins with AV discordance and DORV with Pulmonary Atresia Big doubly permissive VSD hypo plastic right ventricle Anomalous lung drainage.
His ebsteins caused him to have a small right ventricle which of course should have been on the left (Av discordence)
He also has Pulmonary vein stenosis (lower left).
He has had many heart surgies had to take the fontan route.
He is still in recovery after nearly 5 months from TCPC and atrial septectomy.
So we have one recieving chamber and one pumping chamber (a frogs heart)
He faces a heart and lung tranplant one day just hope he is old enough to make his own mind up.
Adam Ebsteins- the valve is badly formed it leaks a little but he has no surgery with regard to epsteins.
I do worry about it his heart gets checked very often at hosptial but I take each day as it comes I love him to bits his the best son a dad could have a real pleasure to look after.
He takes many meds Captopril, Sidenafil, Spironolactone, Furosemide, Warfarin, Magnesium Glycerophosphate.
He requires 24/7 oxygen at the moment but his getting a little stronger each day he had such a rough time in hosptial.
He takes no meds for arrthmia which as you all no here Epsteins is associated with problems with the electrics.
Thanks for a great site not much info on Ebsteins which can also be very complicated and rare.
Again thanks for the link I will be coming back often at night to read.
Very best wishes Tim.
Comment by Tim — March 1, 2009 @ 11:15 pm
Hi
I’m currently 35 weeks pregnant and our baby was diagnosed with hypoplastic right heart, probable Ebsteins tricuspid, hypoplastic right ventricle. The last visit saw the regurgitation go from sever to mild/moderate and our right atrium doesn’t seem to be so enlarged any more. Our pulmonary arteries seem to be growing at a normal rate. We are going to book in for a section in the beginning of April and baby is on course to have the BT shunt operation at 3 days old.
It’s the fear of the unknown that is most difficult to cope with but on a scale of 1-10 as to how positive we are feeling we have gone from -100 at Christmas when we were given the news first and things looked fairly bad, to -50 in January when we had more positive news and now we’re at -10! seeing as how the severe regurgitation and the atrium have “resolved”.
Thanks for setting up this site – it’s well put together and good to have another source of reference.
Take care all
Eveline
Comment by Eveline Holmes — March 5, 2009 @ 10:20 am
Dear Eveline
I really hope that things will not be as bad as you fear. Amanda’s story about her diagnosis at 20 weeks is a positive one, but the waiting game must be incredibly hard. Please let us know how things are going.
Caroline
Comment by caroline — March 5, 2009 @ 7:15 pm
I have 4 children and our youngest are twins aged 13 years, one of them, James, was diagnosed with severe Ebstein’s at 3 days old. We were then rushed to Southampton hospital and a watching game ensued while we waited to see how he would tolerate the severe misplacement of the tricuspid valve and the ASD. He surprised us by tolerating it amazingly well, he was mildly cyanose and felt the cold more than his twin sister but otherwise he thrived. He started walking on the same day as Imogen and it was only as he grew older that you noticed his exercise intolerance – he would run out of puff more quickly than others but it didn’t stop him for long. Eventually when he was 8 it was decided that his heart was too enlarged and it was time to operate. James Munro in Southampton (since retired) did a spectacular job closing the ASD, reconstructing the valve and reducing the size of the heart, but he had a rocky time in hospital with a few big setbacks along the way. It took a long time for him to recover emotionally, he is a bright boy and nosey too! and had spent too long in intensive care listening into consultants discussions, he worried about himself and developed an obsession with cooking things with oats as he had seen a poster in hospital about eating for a healthy heart!
Now he is really well, nothing stops him and he plays hockey for his school team! Yes the valve is still leaky with a moderate regurgitation but he still seems to tolerate it incredibly well.
As for how much to tell and when.. we have always been open about it, probably because the older two children knew about it from the beginning. We have just used the everyone is different line – Daddy has glasses, x has asthma, y has a mole on her nose etc! But I am aware that we are now much more cagey about asking consultants about the condition/prognosis etc at appointments as they are not always sensitive to James listening in. Sometimes we have had to call afterwards and get clarity on an issue and before his op we asked for an appointment with the surgeoon on our own before we went ahead with it.
Best wishes
Emma
Comment by Emma — March 24, 2009 @ 9:29 pm
Hi, all. My 3 year old son, Justin, was born with severe Ebstein’s. We found out during my 20 week ultrasound. Just had a modified BT shut at 15 days, the bidirectional glen at 7 months, and this summer will have his fontan. Justin is single ventricle (meaning the right side was so useless it was more of a libiality than anything else, so they patched it shut and he only uses the left side of his heart). Other than taking a baby aspirin daily, Justin is on no meds and is just like other children. He is smart, energetic, and loves tot alk and play. We’ve had good days and bad days, but the good definitely outweight the others. We started a binder when we found out about Justin’s condition. We printed stories from the Internet from other children with Ebstein’s, we put in pictures of “normal” hearts Ebstein’s hearts, and we also keep an online journal ourselves (http://www.caringbridge.org/visit/justinbriscoe). When Justin is old enough to understand what’s going on, we plan on giving him the binder and letting him read the journal, which began a few days after he was born. HOpefully it will be the best explaination of what’s going on with him, and how far he’s come. I hope this helps some other parents who are debating on how to explain to their children as they get older.
Comment by Kendra — May 12, 2009 @ 5:34 pm
Dear Kendra
That is a lovely idea, and very thoughtful. We have now told Florrie a bit more as our forthcoming barn dance charity fund raiser has been the catalyst. Like me, Florrie has taken on the chance to help others with the same condition as an activity that is positive. Whilst she doesn’t know all the ins and outs of everthing, she understands a little more, and says that the children at school don’t believe she has her own charity! I have tried to help her come to terms with this by seeing the positive side.
Caroline
Comment by caroline — May 13, 2009 @ 9:31 am
Hee. I guess I approached this subject like I did sex. I answered her questions openly and honestly and only giving as much information as she needed before her eyes glossed over. If she is curious, keep discussions open so the information they seek is balanced and accurate. I would ask “Is there anything you want to know?” and let her take it from there.
My daughter was not overly interested (self-protection I think). She asked only to be present for the cardiac exams and she was allowed to leave the room for the consults. (We just told the doctor that was her wish as they entered the room). She would ask questions later. She eventually eased into the consults as she aged and even as an adult she has no interest in keeping up with the research etc. (but she knows I do as does her older sis). I’ve never heard her ask the “hard questions” to a doctor. She can only handle the “what do I have to do now?”.
We were always open with her and told her that her heart was twice the size of her friends, so she embraced that and always told people she could love twice as much. She does have a “big heart” personality. We also let her know what her limits were (if your heart races, stop activity and call for help – etc.) – ok, maybe we preached that one.
If your child is without symptoms it is sometimes hard for people to believe the seriousness of her condition, and so my daughter withdrew from sharing it with anyone. (A typical conversation: “I’m having heart surgery next month” and they’d respond “yeah, but Johnny called another girl last night, sob”). People simply can’t comprehend what your child is going through. It was difficult for her friends to deal with so they avoided it and, unfortunately, her (post-op, etc.) I have always felt this condition does not define who she is, so I’m glad it doesn’t consume her thoughts and discussions. She has lived a pretty normal life, and for that I am grateful.
You are her support, and she is lucky to have you! The docs will make the decisions, you can simply hold her hand and follow her lead.
Her faith also helped her a great deal. She kept it private but it gave her peace.
Best of luck on your journey!
Comment by EAMOM — May 16, 2009 @ 4:30 pm
I too wanted to express my thanks for setting up such a great website!
In repsonse to your query there is a great website that explains heart conditions in ‘simple’ terms explaining the heart like a 4 roomed house! The page is:
I too wanted to http://www.childrensheartinstitute.org/
My daughter is 6. She was diagnosed with a heart defect before she was born and Ebsteins after she’d been rushed down to GOSH. She has a narrow pulmonary valve and had a part bypass for that 3.5 years ago. She suffers from tacycardia and is on medication for this but they’re hoping to do an ablation which hopefully mean she can stop the medication.
They were expecting to do the rest of the bypass which would effectively make the RHS of her heart redundant. However, because EA is so rare she is a’wait and see’ patient. We’re hoping this patience may have worked as when she has her ablation they’re are going to check her valve to see if they might be able to do something with it instead!
I have been very lucky with Jennifer though because if you met her you would look at her and see she was the youngest of 4 children with 3 older brothers and not a child with a heart condition. She is a lovely smiley girl and is actually looking forward to having her ablation so she doesn’t have to have her horrible medicine any more!!!
Amanda
Comment by Amanda — May 18, 2009 @ 2:06 pm
We have always been up front and honest with our 5yr old about her ebsteins anomally. She is the one that has to live this with disease and she knows her body better than anyone else. She know to stop when she has a palputation or feels tired. The earlier a child can accept it the quicker they can empower themselves with knowlege.
Gaylene in OZ
Comment by Gaylene in OZ — August 14, 2009 @ 7:53 am
His name Is Tyler Ryan Hughes,
It started off when I thought I was only getting another ultrasound to see if he was going to be a big baby like his older brother, there is when they had noticed something, I was sent off to the hospital right away, they scheduled me with a specialist, that was the hardest, longest day of my life, We were told that day he will NOT make it if we dont do surgery. I was told his valves are misplaced. 3 days later I had went for a stress test, and I guess what they saw made them take him that day, May 28th 2009 at 1:08 pm. By c-section, I didnt even get to see him, there was about 4-5 doctors surronding him trying to put a breathing tube in him, they sent him off to intensive care where about an hour or 2 later they finally brought him to me. He was absoutely beautiful. I cried my eyes out knowing a couple hours later he will be taken, and so a couple hours later they rushed him off to A.I Dupont childrens hospital, where a team was waiting for him. I had to wait 3 days in the hospital, longest 3 days of my life. I attached the picture of him (where you see the tubes and all the wires) thats what he looked like the first time I got to see him at Dupont, I literally hit the ground. All I kept thinking was why, Hes so innocent. they were explaining to me he has ebstein anomaly. Where they are going to preform 3 major sugeries, and that is called the Norwood procdure. They will put a shunt in and close off the right side of his heart. On june 3rd, 2009 that surgery happend, it took 2 hours long. The first 24 hours was going to prove if he was going to make it or not. Then later on he required another surgery because he had build up fluid and needed a window to drain it. He was in the cicu for over a month, I didnt get to hold him untill the very last week he was in there. He was then moved to 2b, the room I was staying in. He has had many echos, many xrays, many IV sticks, many scary moments, when they had to put the breathing tube back in him. 2 and half months later, we were told we can go home, and I cant express the feelings I had that day, but yet very scared. This little guy only being 2 and half months old and has been putting up the biggest fight, I know his battle is not over. In november he will going for his second major surgery, then around his first birthday his 3rd. I wanted to share my story and put it out there, because you are not alone. I knew nothing about esbstein anomaly, and it was hard for me to find someone that has had it. My email is address is jessie_devault -at- yahoo.com I am here for anyone!! I want everyone to know, our children are strong, they have the will to go on!! And we stand by them 100%!!
Comment by Jessie Hughes — August 23, 2009 @ 2:43 pm
I have always tried to describe Ebsteins as clearly as I could in a way I thought was right for my child across the years (he is now 14 years old); I’d relied for a few years on saying that a leaky heart valve was a bit like a leaky washer in a tap and some people might need to have this repaired or replaced at some point. I felt quite pleased with this as he seemed to understand what I meant. Then we had a leaky washer in the kitchen tap – which was helpful – and then not helpful. It turns out that for years he thought his heart was leaking into his chest! He was most relieved (very recently) to learn that this is not the case. He’d clearly been worried and I felt dreadful. Lesson I learned from that is that its always worth checking your kid’s understanding – they can take things surprisingly literally.
Comment by Jayne — November 23, 2010 @ 3:02 pm