Surgery or No Surgery?
15/10/09
Our son, Bill, was born with Ebstein Anomaly. For nine years, he had been constantly followed up by his cardiologist. Recently, his cardiologist, suggested an operation and referred us to a cardiothoracic & vascular surgeon. According to the surgeon, he will correct the Trascupid Valve (TV) and patch the Atrial Septal Defect (ASD). Besides that, Bill has a loose Mitral Valve that need to be fixed as well. His heart was also swollen by a little.
Throughout the nine years, Bill did not show any symptoms of blue or exhaustion, except for complaints of tiredness once in a while when performing sports activities. We are quite brothered by whether we should send him to the surgical table. In addition, the surgeon we approached had done only 5 cases and he was considered as the most experience in our country to have performed Ebstein Anomaly operation. So far all 5 cases are still alive.
The surgeon said that this would be an elective operation. We went to another surgeon and he too suggested that an operation if not done now will be necessary in the future. However, the operation risk and complication will increase as he aged.
Because Bill doesn’t really look that sick to be operated at all. That is why we are in a dilemma. I would like to seek any advise or views on whether we should go for the operation.
8 Comments »
RSS feed for comments on this post. TrackBack URL
Hi there
You don’t say which country you live in. As far as I know in my experience surgery is usually done as the person deterioates, becomes unable to function properly – such as being breathless going upstairs. I have often heard that surgeons do not intervene with a ‘well’ child, although one of the journal papers (see our ‘research’ section) around the cone technique mentions that it may be in some cases where this technique is used that surgery should be just prior to deterioation (if you can tell when that is).
As you say Ebsteins surgery is rare – again I am not sure where you are but assume not the USA where such surgery is concentrated in specific hospitals such as Boston or the Mayo.
Let us know where you are and perhaps there will be people who visit this site with more specific knowledge of your area.
Caroline
Comment by caroline — October 15, 2009 @ 9:26 pm
Hi Caroline,
Yes. You are right that I am not in USA. I am living in Singapore.
Comment by kohbh2000 — October 18, 2009 @ 6:15 am
Hi,
I just want to say that after reading the above comment I don’t feel so alone. I live in the UK and my daughter is awaiting cardiac surgery at present, as you understand I am terrified.
Reading your comment, you could be talking about my daughter Sophie, she is also nine years old and has experienced the exact same symptoms as Bill with a recent deterioration in her condition.
I have to say tht we had not noticed a change in her symptoms so it came like a bolt out of the blue when we were told in May that Sophie needed surgery. Is is so hard to make the decision to opt for this knowing that the mortality rate is 5%.
As you know the condition is so rare that very few operations have been carried out at Birmingham Childrens Hospital, although we have also been told that the success rate is 100%.
I can’t advise you what to do, we are going ahead with the planned valve replacement but it is not a decision made easily. I have to be honest and tell you that I feel guity at making the decision and want to change my mind on most days.
Stay in touch and keep me informed on decision.
With very best wishes, Jill
Comment by Jill Garrett — November 19, 2009 @ 3:04 pm
Hi Jill (and Bill’s dad)
My goodness your stories are so similar to ours. My son also reached 9 years old with a severe misplacement of the tricuspid valve, asd and enlarged heart and we were suddenly told that he needed surgery when as far as we were concerned he had been a bit blue at times but otherwise seemed fine and had been biking up hills the week before. We were so, so scared – it felt like I couldn’t breathe for months – but he had his surgery, in Southampton Hospital (Wessex heartbeat), and despite a few tough days in intensive care, it has been really good. He still has a moderate regurgitation but despite this is very fit and well and plays team sports for his school.
I hope that things are going well for you and if I can help let me know.
Best wishes
Emma
Comment by Emma — February 1, 2010 @ 7:18 pm
Hi there,
We live in Tulsa, OK. I wanted to add my comments, as my experience has been as Caroline wrote — not to do the surgery on “well child” and wait until it’s really needed — not elective. My daughter, Marjorie has always been “looks good see you next year” for almost 12 years. We have always had conservative cardiologists — Seattle, Minneapolis, now Tulsa, but this past July, it was obvious she needed surgery. Her pulse ox went from a steady 94-95% (her entire life) to 88%. She would get winded running 5 yards. It was a terribly difficult time, but her color was off and her heart was moderately enlarged, as opposed to slightly. We did research the surgeons who did the procedure and were very confident in them (one was from Dallas, one from Chicago Childrens). Since this is such a scary time for a parent, I just wanted to share Marjorie’s success with you. The day after her surgery (they were able to tuck in the ventricle and re-flip a flap — took them two tries), she told me, “Mom, even though I’m really sore and hurt, I actually feel better.” She sometimes takes off running because now she can. Know that you aren’t alone, and I wish I had known of this site BEFORE her surgery. Good luck and my best to you all. Keep us informed, and you take care as well, Jill
Comment by Anne Sheaff — February 1, 2010 @ 11:50 pm
Hi everyone,
I’m so glad I found this site. I’m having second thoughts on my daughter’s coming surgery in April. Currently my daughter, Janna, is 4.5 years old and showing no symptoms related to her heart condition (she has Cerebral Palsy and yet to walk so maybe that’s why we don’t know if she does get tired easily). She has mild EA but with severe tricuspid regurgitation.
The doctors always said that Janna might need a surgery when she’s older (between 8-12 years old). So, when we came for her annual checkup last September, they suddenly told us that they’ve already took her case to a conference with other surgeons and agreed that she should have the surgery in March (later postponed to April or May), we were in utter shock. And as the time getting nearer, I’m getting more and more nervous about it.
We’re in Malaysia and she’s going to have her surgery at the National Heart Institute (apparently the best hospital here for heart procedures). Her procedure will be done by the head of cardiothoracic surgeon there (I’m assuming he’s also the best since he’s the head surgeon).
But, I’m still worried sick about this as I keep on thinking about watching her in pain post-surgery.. she’s still too small to bear the pain but old enough to speak & act about it. Would appreciate some advise. Thanks
Comment by Fiz — February 11, 2010 @ 10:21 am
We live in Wales and our litttle boy was diagnosed at two days old. Alhough he spent his first year on amiodorone for his fast heartrate but since then has had no medication or treatment. He has check ups every 18 months and is now 9 years old. He shows no symptoms whatsoever and we so hope he continues well, he is very active. It’s interesting to note quite a few people have noted symptoms appearing at this age.
Comment by lisa — February 22, 2010 @ 4:11 pm
Hi Fizz and everyone,
It’s been a while since my last posting, just before Sophie’s surgery in November in fact.
I have a long tale to tell and will try to make it brief. As you all know I found it difficult to consent to Sophie having surgery as she had appeared well to us and the consultants decision about the need for surgical intervention came completely out of the blue.
Sophie being in intensive care was awful and she had a few setbacks during that week. I beat myself up constantly about giving consent for surgery. After this she gradually recovered and was discharged from Birmingham Childrens Hospital just before Christmas.
I have to say that those few weeks were the worst in my life but as I was told by one consultant while Sophie was in intensive care, really I had no alternative to make this decision.
Sophie’s heart was in a worst state that than the tests showed and aswell as a tricuspid valve replacement, she had her ASD closed and a Cardio-pulmonary shunt. I just cant believe that she went through all this when I look at her now. The scars for all of us are emotional but they are healing.
Sophie did develop a fast heart rate a month following surgery but this is well controlled by medication.
This site is so valuable for us all to explain how we really feel,I know that it seems like we are going mad at times so lets use each other. The surgeons look after our children for a brief time only, they can’t really understand how it is for us as parents.
I know that I made the right decision for Sophie to have surgery, she is healthy and happy and no longer has blue lips and cheeks.
I wish you the very best of luck Fizz. Please don’t hesitate to contact me is I can offer help in any way.
Love to you all, Jill
Comment by Jill — February 24, 2010 @ 2:33 pm