A Mother’s experience- Tetralogy of Fallot(TOF).

Myafibheart.com, Tetralogy of Fallot
My mother with her Tetralogy of Fallot son . https://www.myafibheart.com/blog/

Tetralogy of Fallot and other stress

I was born with Tetralogy of Fallot. I’m 48 now. I work in Law Enforcement and have been in many scary situations. I’ve had open heart surgery, one ablation, 8 cardioversions. A few car accidents and a motorbike accident. Then there also was that near-drowning incident and a few cycle falls, blood stitches and all. Sorry, Mom that I make you stress so much.

After my Mom read my blog she decided to write about her experience with me as a “blue baby” who had Tetralogy of Fallot. She had to go through a lot to raise me. Here is her letter:

My Mother’s perspective

Janco was born in a nursing home in Sasolburg South Africa in January 1971. My pregnancy was normal and my GP was satisfied with my progress. It was a normal birth.

But when Janco was born his whole body was blue. I was concerned but my GP said that some babies are blue at birth. At home, Janco was a calm baby. My second concern was that Janco only drank a little milk, then stopped as if it was a big effort to drink the milk, he was then tired and fell asleep. My third concern was that his nails and lips were blue.

Because of all these symptoms, I took Janco to the hospital in Vanderbijlpark for tests. Here I heard the unexpected news: Janco had a heart defect: Tetralogy of Fallot – four heart defects:

  1. Displacement of Aorta (Overriding aorta)
  2. Narrowing of the pulmonary valve (Pulmonary stenosis)
  3. Hole in ventricle septum (A ventricular septal defect)
  4. Thickened ventricle (right ventricular hypertrophy)

When the dr. gave me this unexpected news and explained the magnitude of Janco’s heart condition, Tetralogy of Fallot, I only saw his lips moving, I could not hear him but I then new my lovely son was very sick!

The dr. warned me that I had to take good care of Janco and if he would catch a cold it could easily become pneumonia. This stress his heart could not take. My husband and I became overprotective of Janco. The dr. told us that they could operate to correct his heart but those days they only operated on children when they turned 5 years old and their heart was as big enough.

Those 5 years of waiting and keeping Janco healthy and alive were years of immense stress on our marriage. Our marriage could not handle the strain and we eventually separated. Sadly my husband became an alcoholic and died in 2000.


I moved to Bloemfontein to my parents, here my family and friends gave me wonderful support. The stress of the marriage was gone and I could now wholly focus on my son. Janco had to take many tests to prepare him for the operation that was scheduled for 22 November 1975.

I remember one day when my mother and I took Janco for tests he started crying because he knew what was coming and asked: “Granny is it you or me for the test again”? This broke my heart, but I knew that my little 5-year-old son, Janco had to undergo an operation to save his life.

The operation

Under the guidance of the excellent dr. Meyer, Verwoerd, Hough and other brilliant Drs and nurses they did the operation in the once proud National Hospital in Bloemfontein, South Africa. Thanks to our Heavenly Father, Dr’s and nurses the operation was a huge success. Janco was now a wonderful pink color and not blue. The third day after the operation when I visited him in the hospital he came riding down the hallway on a tricycle to meet me.

I was so upset, but the nurses reassured me that this was the best for Janco’s recovery. He recovered wonderfully and had a normal youth. At age 24 he married Jenny a wonderfully supportive wife and they have two beautiful children.

Heart “maintenance”

Janco takes great care of his health by doing exercise like cycling and running. He also watches his diet, like drinking Rooibos tea, and looks after his spiritual side. He finished the well known Cape Town Argus Cycle Tour, 109 kilometer (67 miles), seven times – what an achievement!

As he got older he faced a few challenges with his heart rhythm and was diagnosed with Atrial Fibrillation. Every time his wife calls me and tells me that my son is in hospital my knees and heart turns week as I remember what we went through when Janco was so much younger. It is an ongoing concern in a mothers heart. I thank God for his recovery and his excellent Cardiologist Dr. Roscher who helps him every time his hearts rhythm goes out.

Janco’s faith in God is his anchor in life.

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