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A Mom's Perspective of her Daughter's Battle with Tetralogy of Fallot, a Heart Defect

As a parent, we all know how much our children mean to us. But things are especially gut-wrenching when they are sick or have to be in a hospital more than is desired or should be necessary. We always want them to be happy and healthy, but we obviously cannot protect them from everything.

During my second pregnancy, with my twins, I was going through a routine ultrasound just eager to see my girls' faces on the screen. I was in my Second trimester at the time. I briefly noticed the technician jot something down but paid no mind to it. However, when I met with my doctor afterwards, I realized there was something that the technician saw. My doctor said there was a "white spot" on the heart. Keeping me calm and telling me not to worry about anything just yet, she said it could be just a simple "hole in the heart" and some babies actually have theirs close up. But she said it could also signify Downs-Syndrome. And of course, hard as I tried to focus that it was "nothing," I worried the worst.

The following weeks after that I met with another pediatric heart specialist who recommended me to another one. Finally, after one of my many ultrasounds, the last pediatric specialist I saw met with me in a "room" afterwards. My stomach was in knots. She sat down and closed the door. And all I could see was that Kleenex box on the table. Ugh... She was very matter-of-fact but also managed to be compassionate. One of the twins had "Tetralogy of Fallot".

Naturally I had no idea what that meant. Without getting too technical, her right pulmonary valve was not working, not complete. So, blood flow was not circulating properly. But it was reassuring to here her say it could be corrected with surgery. That was a relief. However, depending on how severe she was when they could really see her (after birth), she may require surgery immediately.

At my 32-week mark, the twins decided they wanted out. They were precious and so tiny! They both weighed around 3 lbs each. I think that was the only time my twins really have looked so much alike - at birth. Unfortunately, my little girl did have the most severe case of ToF so surgery was scheduled in 2 weeks time. It was about a 4-hour surgery. They were putting in a shunt. But she did extremely well recovering! I was so happy.

ToF unfortunately requires multiple surgeries throughout your life, adjusting to your body's growth. Before this past Christmas, she had her second - "most crucial" - surgery. This surgery was very nerve-wracking. I could not hold her until maybe 2 weeks later because of all her tubes and medicines. She was in the hospital for about 3 weeks, but she has done so remarkably well.

My twin girls are fraternal, and since ToF makes you burn your food quicker, there is definitely a noticeable difference in height and weight between them. But, I am ever so thankful to all my daughter's pediatric surgeons and am grateful to how their skills have helped my daughter continue leading such a healthy life.

  1. Mom's Perspective

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  1. Zonali Zonali

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