Tetralogy of Fallot identified at 20 week scan

[RoseFarm]

Hi,
At my 20 week scan, a heart defect was identified on our little baby. We were referred to a fetal heart specialist who confirmed our little girl has Tetralogy of Fallot. We chose to have an amnio test as there is a possibility of chromosome abnormalities too. Until we hear results, we are driving ourselves crazy with the unfortunate news. We are looking for people's positive stories who might have been through something similar? The doctors were positive, saying that this can be operated on so our child can hopefully lead a normal healthy life.

@mardim well we had a bit of a shock when he was born as he also has other medical issues that we had no idea about! It is suspected that he has charge syndrome as another poster above has written about.
He was in hospital for 2 weeks but is now 11 weeks and doing pretty well!

@mardim ps I was moreteaplease84 but I have name changed since then!

@stopusingmyusernames I am so sorry to hear that. So your little one had tetralogy of fallot, amniocentesis was clear and he was diagnosed with charge syndrome after birth?

@RoseFarm what happened to your little one? I’m sorry I don’t want to be nosey, just wondering if there are still chances of other syndromes even if amniocentesis comes clear thank you

@mardim Good Morning, I hope you're feeling ok. I just wanted to respond with what's happened with us until now even though our story is slightly different to yours. So I am now 35 weeks pregnant and apart from ToF, nothing else was found with our baby. However the hospital have been fantastic, giving me regular growth scans and at 32 weeks they picked up that my placenta isn't working as efficiently as it should be, as in the pressure through the cord is low. I am awaiting fetal medicine appointment, another fetal heart echo and another Doppler scan but the doctor told me to anticipate being induced at 37 weeks. All very overwhelming when this is only 2 weeks away and I don't know what's happening! I can't help with the Papp A, but I know that's also a problem with the placenta? I am sure you will be kept a very close eye on. Try joining the Facebook group, Tetralogy of Fallot. It's been invaluable to me for support.
In regards to other syndromes, I have been told everything is 'normal'. We will have to wait and see I suppose.

@FreezerBird Hey, thank you for getting in touch. I don't know how I missed your initial message back in February! Hope you're still all ok?!
I hope you don't mind me asking, how come the Charge Syndrome didn't get picked up on the amnio? It's not anything I've ever heard before.

@RoseFarm thank you for your reply, much appreciated! A few people have mentioned Charge Syndrome so I am also interested if this is something that can be detected prior to birth.

@RoseFarm Fingers crossed everything will be ok, sending positive thoughts x

@mardim Thank you. Sending lots of positivity to you too :) xx

My son had a different kind of tof-the oesophageal one,not anything to do with his heart. Tof is used as short hand for both! We had an Amnio which came back normal. But charge syndrome is not picked up from an Amnio. I think they may be able to if they are specifically looking for it but they don't generally test for it.

@stopusingmyusernames thank you for the information!