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Low PAPP-A and diagnosis of TOF at 20 weeks

(15 Posts)
mardim Mon 25-May-20 14:17:59

Hi all, I hope you are well.

I was diagnosed with low PAPP-A during my 12 week scan (0.40) and was advised to take 150 mg aspirin daily. I was given a leaflet about low PAPP-A and that was it. I had my combined test and it all came clear. During my 20 week scan, they found possible TOF, waiting for a specialist scan. Has any of you had low PAPP-A before getting a diagnosis of TOF for your child? I feel that my midwives and hospital are not helping me at all. I have to google everything! When I mentioned TOF to my midwife, she said let me google it... Thank you for reading my message

OP’s posts: |
Dcw20 Mon 25-May-20 18:10:55

Hi,

I’m in the same boat!

I am on aspirin for low PAPP-A after my blood results from the 12 week scan. I also had a very high NT measurement which meant I had to have a few tests and an early anatomy scan at 16 weeks at a Fetal Medicine Unit where they diagnosed my baby with Tetralogy of Fallot.

Are you seeing any specialists/consultants at all? Midwives don’t really deal with these heart conditions so you should be referred to a consultant or something I think?

My next appointment is my 20 week scan and then I’m seeing a consultant for an extra growth scan at 24 weeks - are you having the same do you know?

My sister is a midwife and said that low Papp-a is much more common than you think and she said I didn’t need to worry about it which made me feel a bit better. I’m not sure if they’re linked or not though, I forgot to ask the cardiologist at my appointment.

Sorry you’re also going through all this stress 💕

mardim Mon 25-May-20 18:41:52

Hi Dcw20 thank you for your reply.

I am having a specialist scan this week to check my baby’s heart. I read that TOF can be linked with Down syndrome and other learning disability syndromes but when I had my combined test everything came out clear and my chances of Down were 1 in 290. I feel a bit anxious at the moment but the specialists will hopefully shed light to most of my questions. I have extra growth scans for 28 and 32 weeks but waiting for further guidance/advice from the specialist fetal unit.

OP’s posts: |
Wearenotyourkind Mon 25-May-20 18:50:12

Message withdrawn at poster's request.

Dcw20 Mon 25-May-20 19:10:22

@mardim that’s good that you have a specialist appointment soon - hopefully they will give you more information and reassure you a bit.

It can be linked to some chromosomal conditions so they might offer you a NIPT test or an Amniocentisis?

I had a CVS after my 12 week scan which came back all clear for any chromosomal disorders luckily - so TOF can just happen on its own.

I hope it goes well next week, keep me updated!

mardim Mon 25-May-20 21:24:18

Hi all, just to clarify it’s tetralogy of fallot, not tracheoesophageal fistula. Thank you

OP’s posts: |
mardim Tue 26-May-20 03:09:32

@Dcw20 thank you for your wishes x

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mardim Thu 28-May-20 07:36:30

@Dcw20 May I please ask you how old are you and if this is your first pregnancy? I am 35 and this is my first pregnancy x

OP’s posts: |
Dcw20 Thu 28-May-20 14:17:04

@mardim I’m 29 and it’s also my first pregnancy - it’s definitely been a difficult first experience!

IhearyoucallingMarianne Thu 28-May-20 14:29:57

Hi
Just name changed, long term poster. I thought I would pop on to tell you my dh has ToF - operated on aged 5, I think they probably do it younger now. He has an annual scan and checkup. He will be 50 this year and lives a normal life, has recently given up 10k runs because of a knee injury, has kids and a full time job etc. I won't lie, I think it was hard for his mum and dad before he had the op as he was skinny and would get breathless easily, but once repaired he has been very healthy. He's almost never ill.

I just wanted to reassure that for my dh at least, ToF has not blighted his life since he was 5 in any way.

IhearyoucallingMarianne Thu 28-May-20 14:31:15

Incidentally my dh has no other conditions - masters level education, good professional job. No learning issues.

ILoveMaltesersIDo Sat 06-Jun-20 13:18:01

@mardim @Dcw20
I had low PAPP-A too, and my son was diagnosed with Tetralogy of Fallot at 21 weeks. He then had to be delivered at 32 weeks, and was quickly found to also have tracheo-oesophageal fistula with oesophageal atresia, for which he needed surgery straight away. We were offered an amnio when we got his cardiac diagnosis, but as we'd been trying for him for 4 years and been through IVF twice we decided against it and chose to have the genetic testing done once he was born. He's now 5, and unless you saw his torso (which has various scars from his surgeries) you would have no idea he was any different from any other child his age. His first year wasn't the easiest, but none if it has hindered him in any way at all.

Dcw20 Mon 08-Jun-20 15:23:58

@ILoveMaltesersIDo

That’s great that your son had such a positive outcome after such a tough first year! Positive stories definitely give me hope.

Did you have any signs before 21 weeks that something might be wrong?

I had a raised NT at 12 weeks which is why they investigated further and did an early anomaly scan.

ILoveMaltesersIDo Tue 09-Jun-20 13:14:00

@Dcw20 No physical signs, I just had a terrible feeling that I couldn't shake off - which, of course, all medical professionals dismissed as me being an anxious first time mum. The low PAPP-A was the only thing that had raised any flags, and even that was only slightly below the threshold.

sidsidsid Tue 09-Jun-20 13:20:26

I am currently 33 weeks pregnant.

Low PAPP A picked up at my 12 weeks. However I wasn't told until I was called for a growth scan at 28 weeks. I'm now having 4 weekly growth scans and all seems ok so far.

Still a worry though.

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