Best treatment and hospitals for Tetr... - British Heart Fou...

British Heart Foundation

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Best treatment and hospitals for Tetralogy of Fallot examinations and surgery? Born with it and so far 3 open heart surgeries.

ocarina404 profile image
6 Replies

Tetralogy Of Fallot

Congenital heart disease

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ocarina404
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MichaelJH profile image
MichaelJHHeart Star

Hello and welcome to the forum! If I assume you are a UK resident your inital surgeries were probably carried out at Great Ormond Street Hospital. My next assumption is that you are in your thirties. Because you started with a very complex condition u would suggest you get a referral to Cambridge Papworth Hospital. Wishing you all the best, MichaelJH

ocarina404 profile image
ocarina404 in reply toMichaelJH

Thank you so much. I am actually just getting to know the page, so I might be a little lost as to which group specialize in what and where. I am Ecuadorian, but thanks to my family I do have European citizenship. My Tetralogy is not completely fixed and my insurance doesn't cover my ToF, so my goal is to find affordable (or free) treatment anywhere around the globe.

Milkfairy profile image
MilkfairyHeart Star

Adult congential heart disease services are a specialised service.

The Sommerville Foundtion provides this information which you may find helpful.

thesf.org.uk/our-community/...

Royal Papworth is not on the list.

MichaelJH profile image
MichaelJHHeart Star in reply toMilkfairy

Did a bit more delving and it appears that although Papworth have an ACHD (Adult Congenial Heart Disease) Unit complex surgeries are referred to Guys and St Thomas:

royalpapworth.nhs.uk/our-se...

Milkfairy profile image
MilkfairyHeart Star in reply toMichaelJH

The Sommerville Foundation is a charity established by healthcare professionals and patients.

It is a really useful source of information, research and only lists recommended Adult congential heart disease services.

ocarina404 profile image
ocarina404 in reply toMilkfairy

Thank you so much for the response, I will still look into it to see if I can find more information on this.

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