Jaxon’s Story

told by his mum Amanda


Jaxon is about to turn 7 next month on the 2nd of February, he was born with Ebsteins anomaly, we didn’t know until he was 6 hours old. At 4 days old Jaxon went into multi organ failure and he was given 24 hours to live.

We were lucky that there was 1 medication available at that time that would help him. After 7 weeks in hospital and luckily 1 small operation to fit a vas cath we were able to take him home. In the first few years of Jaxon’s life we have had to deal with many issues other than his heart. He attends the renal clinic for stage 3 kidney disease. He was at endocrine for adrenal insufficiency (now discharged) and also haematology for polycythemia (also discharged).

Jaxon is yet to have his heart surgery, they plan on doing a tricuspid valve repair and for this they want to make sure he is as big as possible for it to work. He is very stable with his heart luckily and he has never needed any cardiac interventions so far. He is due for surgery work up this year to see if this is the time.

As his mum I really struggled with his diagnosis and it took me until he was 5 to seek the help I deserved and now I am able to process what happened to our family all those years ago.

If you have been affected by any of the issues raised in this content you can contact info@chfed.org.uk or 0300 561 0065.


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