Our story


My little boy, Toby was diagnosed with EA at GOSH at 18 days old, due to weight loss. He was monitored at Frimley CC every 6 months for the first few years then yearly. Last February his cardiologist said he wanted to carry out a stress test. This was done in September, in November we received a letter advising us that the Doctors felt they should perform the cone procedure as his leak was quite bad,  before complications began to arise. I spoke to the cardiologist who assured me it was in Toby’s best interest for us to elect to have the surgery done asap. Surgery was scheduled for the end of March. The operation was performed at GOSH on the Thursday morning, Toby could not be stabilized during the night so was given a blood transfusion, still not stable so an ECHO was requested, and they found that there was still a leak. He was taken back down to theatre Friday morning where it was found that one of the stitches in his heart had come undone. We were sent from ICU to the ward Saturday evening and discharged from the ward on Monday. The treatment received was poor, and I do not believe that he should have been discharged so early. We were all very traumatized by the whole experience, to see your child lying in ICU with all those tubes is awful, when something goes wrong words cannot explain. Our appointment on the Friday started with a massive nose bleed which the clinical nurses assured us was not related to the op but most likely stress. We have transferred Toby’s follow-up care elsewhere at his request and with our support. At 4 weeks post op he had a mild leak, the right side of his heart is not functioning properly and he has extra and skipped heart beats, these things will hopefully improve over time. At 5 weeks post op he has very little stamina and there are still many things he cannot do, it is heart breaking to see a little boy who walked in to a hospital make such slow progress that 5 weeks later he is weaker and lighter than before he went in. I am not convinced that we made the right decision, maybe over time I will see things differently.

Posted by Lolly.

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