Evidence-based guidelines for management and surveillance of TPFS are still to be developed. For now, there is only general advice:

Treatment of manifestations

  • Speech and language therapy for feeding problems, speech delay and to augment communication. Physiotherapy for motor delay. Educational programs directed to specific disabilities identified.
  • Routine treatment of cardiac, hearing, epilepsy, scoliosis and cryptorchidism problems.


  • Routine eye and hearing checks.
  • Monitoring growth and for spine deformities.
  • Cardiac screening for congenital heart disease and progressive dilation of the aorta.