At birth or in infancy, approximately 50% of individuals with TSC (Tuberous Sclerosis Complex) have at least one tumour in their heart.
These benign (non-cancerous) tumours called cardiac rhabdomyomas do not usually cause any symptoms. Most rhabdomyomas decrease in size or disappear within the first 1-2 years of life.
The term used by health professionals for things to do with the heart is cardiac. Doctors who specialise in children’s hearts are called paediatric cardiologists.
Signs, Symptoms and
Because most rhabdomyomas regress in size, watchful monitoring may be all that is necessary in individuals who have rhabdomyomas that are not interfering with the blood flow or rhythm of the heart.
Individuals with significant arrhythmias may require treatment such as medication. There have been reports of successful use of mTOR inhibitor medicines to treat large rhabdomyomas in infancy.
Read more about mTOR inhibitor medicines.
In very rare cases where there are severe obstructive symptoms caused by large tumours, surgery to remove all or part of the tumour may be required. Because most rhabdomyomas shrink in size or even disappear, surgery is usually only done where there is a severe obstruction or a life-threatening arrhythmia.
Last updated: 20 September 2022
Reviewed by: Dr Alex Gooi, Paediatric & Fetal Cardiologist, Heart Centre for Children, the Children’s Hospital at Westmead
- Kwiatkowski D.J., Whittemore V.H. & Thiele E.A. (2010) Tuberous Sclerosis Complex: Genes, Clinical Features, and Therapeutics. Weinheim: Wiley-Blackwell
- Heart Manifestations in TSC, TSC Alliance, viewed 30th March 2012
Parts of this web page have been adapted with permission from copyrighted content developed by the TSC Alliance, https://.tscalliance.org/www.tsalliance.org.