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?

Posted by mwalsh.
 

9 Comments »

  1. I am in a similar situation, but from the US. My 4 year old son was diagnosed with mild EA in July. The cardiologist said to set a follow up appointment in 2 years. 2 years??!! I don’t want to wait that long. What kind of follow up or supervision was recommended for your son?

    Comment by Brandi — October 13, 2011 @ 9:46 pm

  2. Hi, hope your son (and you!) are coping ok. It is scary isn’t it. Since Patrick was diagnosed in February he has had regular check ups with the cardiologists at the childrens hospital here. He has been checked every 2 to 3 months, and this has been extended to 6months between visits as they said they are very happy with him. I wouldn’t be happy with 2 years until they have a good picture of what is going on with your son. However, if his heart is coping well and the cardiologists are confident he doesn’t need checkups perhaps go to your GP on a regular basis so they get to know his heart sounds etc. I visit my GP if I have any small concerns and then go to the heart clinic at hospital if I think its a bigger concern. Let me know how you get on.

    Comment by Melanie — October 18, 2011 @ 1:07 am

  3. Hi! I am new to this site and just saw your posts. My son has severe EA and it was about 4 hours after he was born. Everything has been going right for him so far and we see our cardiologist every 3 months. We know that surgery is in the works for the future but don’t know when and the waiting game is HARD! My son is 7 months old now and seems like your normal every day 7 month old and it’s at times hard to believe he has a defect. But, in reading your posts above, I know EA tires you easily. My son sweats just drinking a bottle sometimes. He also has been catching the respiratory bugs my older 2 bring home from school and holds onto them for 4-5 weeks whereas a normal child, like my older boys are only down for a week tops. But it is NORMAL for a child with EA to hold on to it. Otherwise, when he isnt sick, he still eats well and is hitting his milestone marks and our heart doc is happy with him. That being said, we went in monthly, and then recently changed to every 3 months, and if that goes well after a while, we will see her every 6 months. I would NOT be happy with a 2 year gap at all. I’d think they would at least want to do every 6 months until they had a good general idea of where he is and whats going on. Good Luck to you all! and if you’d like to email me personally, I would like to share my story and hear yours!! chelsea.stensland@gmail.com

    Comment by Chelsea Stensland — May 8, 2012 @ 3:16 pm

  4. My son was diagnosied at birth with an ultrasound that had the doctors induce me at 36wks. His heart condition is moderate. He sweats easily when he was a baby it was at all times and he had low oxygen for a while but its been ok. We went from 3month check ups to 6 months to a yr. He is now 19months he seems so normal u cant tell he has EA. He was slower at learning and he has gurd n threw up alot meds never helped. We tried everything he grew out of it this is so new to me I never even heard of such a thing n to tell ya the truth I’m still lost I still freak about every lil thing. I enjoy reading about other families and their stories it helps me I barely know really what I should. He goes back for his ekg and echo in Oct when he turns to doc said it worsened from brith when it was mild to now moderate n idk how bad that really is but hopefully it aint worsened he said if so may have surgery by 3 but were hoping he dont have to till hes 16 and hopefully never i pray i have a fort wayne and a indy foc from saint Vincent’s does anybody know of any other doc for EA that I can try out for my baby? – just other opinions matter n helps

    Comment by Ashtyepsteinbaby — May 17, 2012 @ 2:23 am

  5. I have made a support group for australian families suffering ea we also have some links to NZ sufferers aswell. If ur looking for some local support find us on facebook: Ebsteins Anomaly Association of Australia http://ebsteinsanomalyassociationaustralia.blogspot.com.au/

    Comment by cwaldon — May 23, 2012 @ 10:05 am

  6. Hello Everyone,

    My son will be 4 years old in April 2013. He was very healthy and very active kid from the beginning. Just few month back we got him to pre-school where he started to get sick and more tired. Anyway to cut the long story short he was just recently diagnosed with mild ebstein. Doctors said that he need immediate surgery and ASD closure can back fire, condition would get worse.

    We were anxious, depressed didn’t know what to do. Our kid looked and behaved fine, only that he used to get tired easily. Anyway we contacted Children Hospital Of BOSTON for second opinion. That is the only hospital in the world, that has taken care of and seen the most ebstain cases. We went there and we are so blessed that happy that we did.

    Doctors said that in his condition, he doesn’t need any surgery. They also performed ASD closure through Transcath, which initially in our home town were told is a bad idea. After ASD closure, his life style has improved dramatically. He run around, more happy and most importantly never tired . In next week he will have his first ECO after ASD CLOSURE. I pray that results are perfect. I pray that every kid on this forum, including my son will have a very normal, healthy and happy LONG life. (Ameen)

    Comment by Depressed mom — January 3, 2013 @ 4:33 pm

  7. Hi there and thanks for your story. I think it is sometimes good to get a second opinion since some hospitals may see few ebsteins cases and therefore have less experience or expertise in this area. I would be interested to know more about transcath – e.g.what is involved from a patient point of view? My Florrie has asd but I have always thought the only option is to close the hole when doing a repair/replacement.

    Caroline

    Comment by caroline — January 22, 2013 @ 10:58 pm

  8. Caroline, my kid is seen by best doctors in Texas children hospital. I truly respect them all but since they have not seen whole lot of Ebstein Cases ( which they claim they do), they told us that he needs surgery right away. We should not even wait. According to them, only if the valve is replaced/ repaired then we should close ASD, as for moment it is acting as pop up valve for pressure in ventricle.

    We contacted Boston children Hospital. They have seen hundreds of patients with EA and they are tracking them all. For your lovely Florrie, I would seriously suggest you to take her to Boston Children. Before that, go to their website and submit her reports for second opinion. Their cardiologist will e-mail you back himself. My son was seen by doctor Mark. He is an angel. He told us that ASD closure will help our son and we did it ( even though docs in Texas are not very happy).

    Asd Closure is very simple process. My son was 3.5 years when he got it done, he will be 4yrs in April. After the procedure, he was running and shopping IN Boston malls the VERY NEXT DAY. ( We stayed for one night in the hospital but most of the kids are allowed to go home the same day). My baby doesn’t feel a thing. After ASD closure, his height and weight improved and he is very active now.

    So,please before any surgery, do visit Boston Children Hospital. Even if urgery is the only solution, get it from a place where they have seen and operated the most cases.

    Best of luck. Our kids will do great.
    If you have any more questions, do let me know.
    Thanks

    Comment by Depressed mom — January 23, 2013 @ 2:41 pm

  9. Hi all,
    I am currently sitting in Christchurch hospital, NZ, with our 5 week old son Connor, who was diagnosed with EA after birth. He was fine for first few weeks that we got him home, however is now suffering SVT, Supra-ventricular-tachycardia. Is there anyone else who has any experience with this and their child?

    Comment by Josh — April 24, 2013 @ 4:33 am

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