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baby's heart surgery

My daughter was born with several holes in the heart. The paedetrician cardiologist termed it as "Complete AV Septal reject". She is now 9 months old and I have been advised that this is the time for surgery. Surgery should be done before she turns one. Her heart (right side) is enlarged. She is currently on medication 1) Digoxin (0.6ml) 2) Lasix (0.2ml) 3) Potassium Chloride (1.5ml). Items (2)

She only weighs about 6kgs, she can't sit up on her own and has not start crawling. She has difficulty breathing while being bottle fed, pausing to catch her breath.

The surgeon informed us that the objective and expected outcome of the surgery would be :
1) To repair / close up the septum (ASD
2) To get the left valve functional - till as little leak
as possible.
3) Right valve will continue to leak (tissues from right valve
will be used to repair the left valve)
4) 1-2% risk of complete heart block (pacemaker needed if heart
rate <60/min)
We were also warned that leaking from the left valve will increase over time, even after surgery. One or more surgeries will be necessary.
Please kindly advise whether is there really no better outcome from surgery to correct my daughter's heart defects besides what was given above by the surgeon in Singapore? We are wondering perhaps they have not reached the sort of expertise in this field of surgery.
I would really appreciate your second opinion and whether there are other things we should know or have misunderstood. What is the success rate of surgery for babies with this kind of problems?
We would also like to know how much surgery like this will cost at Cleveland hospital and how long the patient will have to be admitted after surgery. How long will it take to heal after the operation. Can my daughter have a normal lifestyle after surgery, ie have kids, exercise...etc.

I really look forward to your response and advise.

Thanks - Gene
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238671 tn?1189759432
Dear Gene

It sounds like surgery is the best option. Repeat surgery is a likely possibility in the future. The hospital stay will be at least 10 days. The recovery period will be several weeks. The limitations after the surgery will depend on how well her heart recovers and remodels. We do a lot of congenital heart surgery here at the Cleveland Clinic. If you are interested in coming here, you can call the number below for details regarding the financial arrangements.

I hope this has been useful. I wish you the best of luck. Feel free to write back.

Information provided here is for general purposes only. Specific questions should be addressed to your own doctor. If you would like to make an appointment at the Cleveland Clinic Heart Center, please call 1-800-CCF-CARE or inquire online by using the Heart Center website at www.ccf.org/heartcenter. The Heart Center website contains a directory of the cardiology staff that can be used to select the physician best suited to address your cardiac problem.
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