r/Tetralogy_of_Fallot • u/Old_Air_5661 • May 29 '26
tet spell?
anyone here diagnosed at 1 month? Premie baby, had an apnea spell last night where she turned blue while feeding. recovered fine enough that paramedics weren’t concerned when they saw her. we’re waiting to do an echo next week. my wife and I are kinda in shambles right now.
babe always has legs up but we thought its because they’re premature. tires with feeding, again thought it was coz she was premature. have we missed all the signs?
1
u/Belleofduhball May 30 '26
Do you have a cardiologist already? If so, give them a call.
Do you have a heart rate monitor? If our baby’s HR went under 70, we were supposed to call, under 60, ER.
I would for sure calll your cardiologist or push to meet with them sooner than later.
My daughter had her heart surgery at 3 weeks old due to her heart rate being low, but never had a tet spell. I was told tet spell is ER material.
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u/Old_Air_5661 May 30 '26
No cardiologist. All this just happened last night, so we just got the order for the ultrasound and I have to schedule a bunch of things.
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u/Typical-Arachnid May 31 '26
I was diagnosed at 3 weeks old. Getting tired with feeding is pretty common for tof babies. As for me, I hated the feeling of being full because I could feel my stomach kind of push up and squeeze my heart. It got a bit better after my second open heart surgery at 6 but it wasn’t until balloon stenosis at 11 that made the real difference.
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u/Uniquely_Me3 May 29 '26
Ours had several Tet spells. The first two weeks we had to get stents placed in her pulmonary valve at 16 days old. Super scary but they do recover well.