I am able to write this today thanks to
amazing doctors, technology and medicine around the globe. I was born with
Tetralogy of Fallot and with 5 out of every 10 000 babies born with this
Congenital Heart Disease there are many others who are not so lucky.
We all feel more or less the same amount
of pain, but we all have a different story. Those stories make us who we are
and our scar(s) show others that we are lucky ones. We are stronger and happy
kids, thus we call ourselves Warriors, for our fighting spirit.
It is thanks to the support of medical
staff, our families and friends but also fate and souls that we are here.
I am proud of my heart condition, it makes
me smile, fight and understand the meaning of faith, dreams and life.
A paediatric heart surgeon, dr. Mani,
describes Congenital Heart Disease as a chilling phrase; a lethal constellation
of birth defects of the heart that affect millions of newborn infants and
children; a killer that claims thousands of lives every year.
“A fortunate few, mostly in the developed
countries, are cured by the miracles of modern medicine. Sadly, the vast
majority do not have access to treatment; they are forced to lead restricted
lifestyles, denied the opportunity to become productive and participating
members of their communities.”
I’ve had about four heart related
surgeries and while I can’t remember the ones as a baby, I remember and still
feel the pain of my most recent one (in 2013). Every day is a learning curve,
and is different. I’ve come to terms that the one moment it would be as if I’m
ready to jump from mountain to mountain and in a split second I would be so
sick I can hardly move. I’ve made peace with the unannounced pain.
Video of ToF repair (not for sensitive viewers)
Family, friends, colleagues might think
once you had the surgery you okay, but CHD is a long term problem – one you
born with and one you will take with you to your grave.
A CHD patient after treatment, if lucky and
in a more developed country can look forward to another 50 years. The path
though is full of obstacles and uncertainties, not forgetting complications.
Employment, insurance, marriage and children are all issues that you constantly
think of and worry about.
Most countries and even organisations
devote more time and budgets towards adult heart disease research. Research and
funding for CHD is thus scarce, almost like the support.
About TOF:
Tetralogy of Fallot is classically understood to involve four anatomical abnormalities of the heart (although only three of them are always present). It is the most common cyanotic heart defect, and the most common cause of blue baby syndrome.
It is treated with corrective surgery, usually within the first year of life, but presents with long-term problems including arrhythmia, pulmonary regurgitation and re-operation.
It was described in 1672 by Niels Stensen, in 1773 by Edward Sandifort and in 1888 by the Frensch physician Étienne-Louis Arthur Fallot, after whom it is named.
Tetralogy of Fallot results in low oxygenation of blood due to the mixing of oxygenated and deoxygenated blood in the left ventricle via the ventricular septal defect and preferential flor of the mixed blood from both ventricles through the aorta because of the obstruction of flow through the pulmonary valve. This is known as a right-to-left-shunt.
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 extertion, clubbing of the fingers and toes and pulycythemia.
According to CHD Info, it is obvious that:
About TOF:
Tetralogy of Fallot is classically understood to involve four anatomical abnormalities of the heart (although only three of them are always present). It is the most common cyanotic heart defect, and the most common cause of blue baby syndrome.It is treated with corrective surgery, usually within the first year of life, but presents with long-term problems including arrhythmia, pulmonary regurgitation and re-operation.
It was described in 1672 by Niels Stensen, in 1773 by Edward Sandifort and in 1888 by the Frensch physician Étienne-Louis Arthur Fallot, after whom it is named.
Tetralogy of Fallot results in low oxygenation of blood due to the mixing of oxygenated and deoxygenated blood in the left ventricle via the ventricular septal defect and preferential flor of the mixed blood from both ventricles through the aorta because of the obstruction of flow through the pulmonary valve. This is known as a right-to-left-shunt.
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 extertion, clubbing of the fingers and toes and pulycythemia.
According to CHD Info, it is obvious that:
- the causes of CHD need to be detected, and soon
- the problem needs to be highlighted, brought into the limelight
- medical facilities need to be made accessible to all patients
- CHD families need ongoing constant support
- treatment must be viewed as a long-term continuing process
Part of the solution is:
Prepare a realistic plan that will assist
in diagnosing and treating CHD, while harnessing the power of the Internet as
an action-oriented health education and awareness tool,
Create a small community-based structure,
and encourage interaction and co-operation,
Enhancing public knowledge of CHD,
Setting aside a day of remembrance and celebration of the great medical
advances which keep our loved ones alive would honor the unseen battle that
children and adults with CHD fight daily. The creation of a day of this kind
would help to lift the barrier of ignorance, helping both the families and
individuals who currently are affected
