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tetralogy of fallot Rss

jane could you tell me how close they are to finding the causes of tetralogy of fallot,
if there are any parents with a child with tetralogy of fallot, please feel free to reply cause i havent spoken to many families in the same situation as myself.

Rach

I’m sorry to hear that you have a child with Tetralogy of Fallot. In reply to your query I have put together a summary of some of the information that I have located and some useful contact details.

Tetralogy of Fallot is comprised of four elements, all of which interfere with blood flow to the lungs: a hole or ventricular septal defect that lets blood pass from the right to left ventricle without going through the lungs, a narrow stenosis that blocks the passage of blood from the right ventricle to the lungs, the right ventricle is more muscular than usual and the aorta is mal-positioned over the ventricular septal defect.

Approximately 15% of patients with Tetralogy of Fallot have a chromosome abnormality, a deletion of a small section of chromosome 22 (22q11). This can be detected by a technique called fluorescent in situ hybridisation or FISH in which the chromosomes are ‘stained’ to identify the deletion. In most cases the chromosome deletion is not inherited, though it can be passed on to future generations.

The heart defects in patients with tetralogy of fallot are usually repaired surgically.

The Association of Genetic Support of Australasia has the contact details of many families with genetic conditions, their contact details are:
AGSA
66 Albion Street
Surrey Hills
NSW 2010
Tel: 02 9211 1462
Email: agsa@ozemail.com.au
Website: www.agsa-geneticsupport.org.au

Kind regards,
Dr Jane Fleming

<a href="httphttp://www.cmri.com.au/">CMRI</a>

I just found out at 31 weeks my little girl has tetralogy of fallot along with a right aortic arch I can't really help but just thought I'd put it out there that I know what it's like. We were just told that she will have to go for surgery at around 6 months then again at a few years. I was offered an amniocentesis but declined as she's very small and with the risk of premature labour it wasn't worth it we will get her tested for digeorge syndrome once she's born. We were told that these bubbas have episode called tet spells when there crying you can't leave them alone as they go blue due to lack of oxygenated blood so you have to stay calm and try to calm the baby down as they get stressed very easily and hold there knees up to there chest to help the blood. We were told she will be in hospital for a week or two to be monitored but then allowed to come home. I was very worried she wouldn't have a normal life as my thoughts were they can't do sport but then I read about Shaun White who is an Australian 2 time gold medalist for snowboarding and he has tetralogy so that really gave me hope. Sorry I'm not very helpful but I haven't found anyone else who's child has this.
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