Tetralogy of Fallot Facts

• Tetralogy of Fallot is a condition that is characterized by several congenital heart defects, occurring at once. They include: ventricular septal defect, displaced aorta, narrowed pulmonary valve and thickened right ventricle wall. 
• Each defect acts in combination with the others to create a malfunction of the heart. 
• The problem starts very early in the uterus with a narrowed pulmonary valve and a hole between the ventricles. This is not particularly a problem for a fetus because hardly any blood flows through the lungs until birth.
• It is only after birth that the defects pose a problem.
• Because of the opening between ventricles, much of the blood that comes back to the heart needing oxygen is sent out without being properly oxygenated.
• The baby turns blue because of the deoxygenated blood that bypasses the lungs and the right side of the heart gets more muscular.
• The low oxygen causes the blood to get thicker and clot more easily.
• Other symptoms include a heart murmur which may range from almost imperceptible to very loud, difficulty in feeding, failure to gain weight, retarded growth and physical development, dyspnea on exertion, clubbing of the fingers and toes, and polycythemia.
  
• Children with ToF may develop "tet spells." Tet spells are characterized by a sudden, marked increase in cyanosis followed by syncope, and may result in hypoxic brain injury and death.
• Its cause is thought to be due to environmental or genetic factors or a combination. It is associated with chromosome 22 deletions and DiGeorge syndrome.
• The condition was initially thought untreatable until surgeon Alfred Blalock, cardiologist Helen B. Taussig, and lab assistant Vivien Thomas at Johns Hopkins University developed a palliative surgical procedure, which involved forming a side to end anastomosis between the subclavian artery and the pulmonary artery.
• This first surgery was depicted in the film Something the Lord Made.
• The first Blalock-Thomas-Taussig shunt surgery was performed on 15-month old Eileen Saxon on November 29, 1944 with dramatic results.
• The first total repair of Tetralogy of Fallot was done by a team led by C. Walton Lillehei at the University of Minnesota in 1954 on an 11-year-old boy.
• Total repair on infants has had success from 1981.
• Tetralogy of Fallot occurs in approximately 400 per million live births.
• Researchers estimate that tetralogy of Fallot occurs in approximately one in every 2000 births.
• Boys are slightly more likely to have this malformation than girls.
• Babies with Tetralogy of Fallot are blue at birth or cyanotic.
• Infants with mild forms can have surgery postponed until they are older. Infants with more severe symptoms often have attacks of worsened cyanosis.
• During attacks, ToF-babies turn very blue, have shortness of breath, and can faint.
• ToF babies are also referred to as Warriors, for their fighting spirit.
• There is no known prevention for Tetralogy of Fallot.
• ToF-babies can have a fairly normal childhood.
• Those born with Tetralogy of Fallot can when all grown-up also have healthy children one day.

I was born with Tetralogy of Fallot 30 years ago (in November) and had four operations 

Tetralogy of Fallot video