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Tetralogy of Fallot for my 2 months old baby

Posted by alina96 @alina96, 5 days ago

Hello! I am from Romania.
My baby boy was diagnosed with Tetralogy of Fallot when he was 6 days old.
We stayed in the hospital for almost one month. We are home now. The doctor said between 6 months and one year old he will need a open heart surgery to fix this 😥
Can I have some advices until then please?
Every day I live in fear that my son will become cyanotic and I cannot give him oxygen until the ambulance arrives.
1) In what situations does the skin turn cyanotic?
Can it occur at night during sleep?
2) He is he agitated during cyanosis attacks? Or calm?
3) Are there consequences of the blood not being oxygenated?

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Mentor
Debra, Volunteer Mentor | @karukgirl | 5 days ago

Hello @alina96, and welcome to Mayo Clinic Connect!
First let me say how sorry I am that your little baby is going through this. And you are too! It has to be so stressful living with this disorder and knowing he will need open heart surgery in a short time. I suppose the blessing is he will not remember having the open heart surgery, and that's a good thing! I had open heart surgery and remember almost everything!
A mother's instinct to protect her baby is so strong, and you have a lot of real issues to cause you fear.
Fear would be natural, so there is no shame in having fear. Try to learn as much as you can to know what your little one is facing. Being his best advocate is the greatest thing you can do for him and you!
Have you read this from the Mayo Clinic?:
https://www.mayoclinic.org/diseases-conditions/tetralogy-of-fallot/symptoms-causes/syc-20353477
While we wait for others who may have real experience with this to respond to your question, how is your little one doing now? How often do you see his pediatric cardiologist?

REPLY
1 reply
alina96 | @alina96 | 4 days ago
In reply to @karukgirl "Hello @alina96, and welcome to Mayo Clinic Connect! First let me say how sorry I am..." + (show)
@karukgirl

Hello @alina96, and welcome to Mayo Clinic Connect!
First let me say how sorry I am that your little baby is going through this. And you are too! It has to be so stressful living with this disorder and knowing he will need open heart surgery in a short time. I suppose the blessing is he will not remember having the open heart surgery, and that's a good thing! I had open heart surgery and remember almost everything!
A mother's instinct to protect her baby is so strong, and you have a lot of real issues to cause you fear.
Fear would be natural, so there is no shame in having fear. Try to learn as much as you can to know what your little one is facing. Being his best advocate is the greatest thing you can do for him and you!
Have you read this from the Mayo Clinic?:
https://www.mayoclinic.org/diseases-conditions/tetralogy-of-fallot/symptoms-causes/syc-20353477
While we wait for others who may have real experience with this to respond to your question, how is your little one doing now? How often do you see his pediatric cardiologist?

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He is good. Sleep and eat well. He has 3300 grams until now (almost one month and 3 weeks old).
We was at cardiologist 2 times until now. Thursday we go again .
Thanks for the link. I will read. ❤️

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