5 Yr Old with Ebsteins
24/08/09
Hello,
My Daughter “Hannah” turned 5 in February. We were diagnosed with Ebsteins at our 20 week pregnancy Scan. We were recommended to terminate our pregnancy. Hannah has mild Ebsteins with moderate tricuspid valve regurgitation. Hannah goes to the cardiologist several times a year and is about to go again to have a stress test done. She is just like any other normal 5 yr old but does tire quite easily. I know it can be daunting awaiting the birth of a bub not knowing the outcome. Hannah was taken straight away to the ICU and given a drug to keep the shunt open while her oxygen levels stabilised. She was fine to move to the ward after 6 days. So far she has not had to have any surgery but this may change in the future. The cardiologist has advised us not to let her participate in any competitve sports which is a big challenge as Hannah strives to be the best at everything she does.
At the end of the day she is just a normal kid. We tell her all the time the truth about her condition and she knows her body better than anyone else does. She knows when she gets palputations to stop and chill out for a while. I fully believe in telling kids all about their illnesses so they can learn what is important.
We feel lucky to have Hannah. There are many other conditions out there that would have taken her from this world by now.
Have a nice day.
Gaylene from Oz.
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Hello
My name is Helen and my daughter Lucy was diagnosed with ebstein’s at our 30 week scan in March 2009. We were given the worst case scenario and told that Lucy was in a very negative group when it came to the severity of ebstien’s.
She was born by emergency c section and taken straight to the children’s hospital where she was started on prostaglandin and other drugs. She was transfered to a regular ward at two weeks old. Surgery was scheduled but cancelled when she started to respond to treatment.
Today Lucy is doing very well and we are due back to the consultant next week for an update.
This is such a great website as at the time of Lucy’s diagnosis we had no where to turn and nobody seemed to know much about the condition. I am so happy to find that there are others out there who know what we go through and can turn to for support.
Thank You
Helen
Comment by Helen — March 25, 2010 @ 4:50 pm
Your story sounds so fimiliar, my daughter Felisha was born with EA and her simptoms were the same as your Hannahs. She had a valve replacement at age 5 at the Mayo with Dr. Darani, which is the best in my opinion and she now is 13 and doing great. Her valve is starting to leak a bit so she will have to get it fixed eventually but I just wanted you guys to know to hang in there.
Comment by Frank Southerland — December 4, 2010 @ 5:32 am