Volume 11, Issue 2 - Barth Syndrome Foundation

In Loving Memory of Oscar
June one of these travelled to his brain and caused a massive injury that he couldn’t recover from.
Page 26 Barth Syndrome Journal ~ Volume 11, Issue 2
This is our wonderful son Oscar who
some of you may have met back in
March of this year in Bristol. As some of
you may be aware, Oscar sadly passed
away in June this year whilst waiting
for a heart transplant in Great Ormond
Street Hospital.
In May, a week after we moved house
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became very unwell with breathing
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Hospital (where Oscar had been born
seven weeks early on the 26 th October
2010). We were then transferred to Royal
Brompton Hospital PICU as he needed
more specialist care. We were with Oscar
here for about two weeks during which
time he began to suffer arrhythmias and
we were advised that Oscar's best hope
was for a heart transplant. Luckily a bed
became available in GOSH so we were
transferred with Oscar via the London
CATS team (Children's Acute Transport
Service).
A couple of days later Oscar had a
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help him while we began the long wait
for a heart. Initially this was a success;
but unfortunately Oscar started forming
many blood clots and sadly on the 21 st of
It is a great comfort in writing this to know that many people who will read it are, or have been in a similar situation to
ourselves and understand what we have been through. As Barth syndrome was very new to us when we came down to the
Clinic in Bristol we didn't stay very long and have subsequently regretted not staying longer to meet more of you as you
were all very friendly and understanding. Some of you pointed out that the Barth boys feel very comfortable in one another’s
company as they don't have to explain anything to anyone, and we felt the same with all the parents.
We really would like to thank everyone who was involved in Oscar's care, obviously the entire team at Bristol, but also those
at Kingston Hospital where Oscar was born, the Royal Brompton Hospital who we were frequent visitors to for checkups and
the two week stay before being transferred to Great Ormond Street Hospital, and of course the team there.
Oscar never really looked unwell on the outside, which was a constant surprise not only to friends and family, but also to all
the medical people we met. We feel that with the exception of the last three weeks, Oscar had a wonderful life and we are
amazed and overwhelmed as to how well he coped.
Finally, thank you very much to Michaela and Annick and everyone at the Barth Syndrome Trust for all their advice in the
beginning and their ongoing support. You are a great source of comfort to us.
With best wishes,
Guy, Liz & Oscar in spirit.
United Kingdom
Oscar
26 October 2010 — 21 June 2011
(Photo courtesy of BSTrust ~ 2011)