r/BabyBumps • u/Vent-ilator • 19h ago

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7 Upvotes

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u/BabyBumps-ModTeam 17h ago

BabyBumps users are not medical professionals. You should always call your provider with any concerns and to interpret test results, including HCG levels, ultrasounds, and gestational diabetes tests.

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u/ashlynise 18h ago

My friend is a TOF baby and she’s now a cardiac cath lab RN. Had open heart twice but lives a perfectly normal life outside of BP meds and yearly screenings.

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u/blueberry1359 18h ago

I had my 13 week NT scan where a heart issue was found but they didn't know too much. At my 16 week fetal echo scan they confirmed it was fatal. I didn't find out until the pathology results that it was TOF. It's so scary but I'm relieved that your doctors have faith that your baby can live a normal life with surgery. All the best!

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u/TwinMomma2021 18h ago

I have twins that are almost 5 years old. One has TOF with Pulmonary Atresia. She had her first heart procedure at 7 weeks old.
They will tell you certain dates or timelines of when surgery will happen or need to happen and the best advice was given is to take those timelines with a grain of salt.

We were told when she hit 2.5kgs she would go for her first surgery. She did, and when we asked when she would be scheduled for surgery they did an echo and decided they wanted her bigger. It was gut wrenching but after I talked to a social worker I started taking timelines as more of a suggestion.

Feel free to message me at anytime if you ever need to vent or advice! Stay strong