BBC Radio Bristol Highlights achievement of  Massimo Caputo and the Ebsteins Society

ES medical adviser Massimo Caputo and Ebsteins Society Supporter Elizabeth Smith talk to BBC Radio Bristol.  Elizabeth underwent a successful repair of her Ebsteins using the pioneering cone technique last year thanks to Dr Da Silva’s visit to the UK.  Tune in to hear Elizabeth talk about her experiences and how the surgery has transformed her life and to hear Massimo talk about how the technique is being disseminated to other surgical centers in the UK.

Posted by Tim.

1 Comment »

  1. I have just seen this and let me tell you i am livid. I am the mother of a now 16 year old boy who had the cone procedure done in Scotland at Glasgow’s Royal Hospital for Sick Children, aka Yorkhill.

    My son had surgery in April of 2014, after 2 years of waiting. My sons files were taken to the Mayo Clinic in Minnesota, America in 2011. At the time we were told by our cardiologist that he didn’t think anything needed done, but if Joseph Dearani at the Mayo thought any different we would be notified immediately on their return to Scotland. This did not happen, a full year passed not a phone call, letter nothing.

    In January of 2012, my sons yearly appointment, we were told they were preparing my son for surgery, my bottom fell through my seat and my son just had the fear of god in him. MY son got until the end of January, 2012 before he started to get really sick. My son was suffering from both Atrial and Ventricular arrhythmias, migraines that he got 2 sometimes 3 times a day, were he had to be sick to get any relief from them. He had bad leg cramps, nose bleeds, totally lost his appetite, went from a healthy 9.5 stone down to 7 stone. He was so tired it got to the stage he couldn’t even manage a half day at school.

    What angers me is, my sons surgery was cancelled 4 times, the 4th time we were phoned 2 days before surgery, to be told there was not enough anathstetic manpower to cover the op on the day. The week before we were told they had found a surgeon in Bristol, Mr Massimo Caputo, i knew something just didn’t add up.

    We found out the excuse for the op being cancelled was once again, excuse my french, but complete and utter bollocks. We found out the reason in fact was, that there was a charity behind the scenes trying to make my sons operation happen here in Scotland. I am very grateful and will be forever in debt to this amazing charity, what they have achieved in Scotland for Ebstein’s children is truly amazing. As before there was nothing but a wait and see policy, wait and see if symptoms present and if they do we will treat them in the best possible way we can.

    This charity assisted with costs to send our Glasgow team, back and forth to the Mayo on educational visits to see the cone procedure being done, they also assisted with cost at the time of my sons operation, to bring the American surgeon and 2 members of his team to Glasgow, Joseph Dearani was unavailable at the time of surgery. Links then had to be established at Boston’s Sick Kids Hospital with Professor Pedro Del Nido. Del Nido was able to talk our surgeon, Mr Mark Danton through the full procedure, from start to finish, without intervening or taking over at any time, which is a major advancement for Ebsteins in Scotland.

    I know my son was very fortunate to have one of the worlds leading experts in Ebstein’s present during his op, however my son suffered a hell of a lot before he got surgery, suffering in my eyes which could have been prevented, and to now find out that infact Dr Da Silva was in the UK in 2011 when they obviously already knew Joseph Dearani’s recommendations is infuriating. to find out Mr Caputo was more than able to carry out my sons op makes me want to spit glass at our cardiac team. They could have stopped all the hear say and suffering but no, as usual they do everything arse from elbow and are as much use as a chocolate tea pot excusing the anethatist, Mr Danton our surgeon (we found out more from him in 30 minutes the night before my sons op , than we did in 12 years of seeing his cardiologist)
    I know my sons cardiologist was shouting from the roof tops for my sons surgery, and i will always appreciate that, however things that happened that just shouldn’t he let fall by the way side, i can forgive but never forget.

    As i said my son suffered and in a way i feel he was the guinea pig for the 1st cone repair to take place in Scotland.

    I hear now they are working with surgeons in Bristol to establish a clear cardiac care plan for Ebstein’s children in Scotland and the time frame they have given the next patient in line for the cone repair is 3 months. i know this little person is already suffering and has been waiting over 2 years now for surgery. lets hope they keep there word and this little person gets the operation soon.

    Comment by Michelle Balfour — July 19, 2015 @ 1:49 am

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