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Antenatal tests

Get updates on how your baby develops, your body changes, and what you can expect during each week of your pregnancy by signing up to the Mumsnet Pregnancy Newsletters.

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Original poster

Tetralogy of Fallot identified at 20 week scan

36 replies

RoseFarm · 13/02/2020 23:43

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.

OP posts:

Sussexmidwife · 14/02/2020 00:34

Just wanted to acknowledge what you have shared. This must be a very worrying time for you. I hope you have been offered specialist midwifery support. I work with families facing issues such as this, so please feel free to get in touch if you have any questions. PM if you prefer for privacy.

Moreteaplease84 · 14/02/2020 12:22

Hiya,not quite the same situation but at 33 weeks,we were told our baby has oesophageal atresia so his oesophagus is not attached to his stomach.
I'm being monitored by Fetal medicine each week and baby will need to have surgery as soon as possible after birth and in nicu for anything from 2 weeks to months.
We have had amniotic fluid tested and the first results for downs,Edwards,pataus have cone back clear but still waiting on the rest (it's been 14 days now!)
It is such a worry so sending love x

Original poster

RoseFarm · 14/02/2020 14:31

@Moreteaplease84
I am so sorry to hear of your complications, I can sympathise with what you're going through, this is awful for us. I can't wait to get the results from the amnio fluid, I just feel like even the midwives are expected not good results (possibly me being very pessimistic). Waiting to hear back from that before we make any further decisions. It's such a hard time :(. Thank you for messaging, it is helpful to hear from others experiences and know you're not alone. Xxx

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ILoveMaltesersIDo · 16/02/2020 13:58

My little boy was diagnosed with Tetralogy of Fallot during pregnancy. I will never forget how scary that time was... and unfortunately things got worse before they got better (but bear with me, there's a very happy ending!) He was delivered prematurely, and soon after birth it was discovered he had tracheo-oesophageal fistula with oesophageal atresia and required surgery straight away. The top of his oesophagus ended in a pouch and the bottom end had formed an abnormal attachment to his trachea, so his oesophagus needed to be connected together to enable him to feed. At this point, his heart was the least concerning of his problems! But, even with all his troubles and all his battles, he came home on his due date.

Fast forward to 9 months old, he had his open heart surgery and since then has gone from strength to strength. He's now almost 5, and other than his scars you cannot tell how much he had to fight in those early days. He shows no lasting signs at all. He's my hero.

We opted not to have the amnio because the results did not matter to me, I was having my baby regardless so the genetic testing could be done after he was born, which it was, and came back clear.

I don't know whether you've had chance to look around online yet or if it's all still fresh and sinking it, but there is loads of support out there. I'd be happy to point you in the right direction if you'd be interested, I wish I had known back when we got the diagnosis as we felt so lonely and scared - and I promise you, there is no need. There's a whole heart community out there ready to hold your hand through this x

BobbyGentry · 16/02/2020 14:08

ARC - national charity helping parents and healthcare professionals through antenatal screening www.arc-uk.org/

AshGirl · 16/02/2020 14:15

Which hospital are you under? My DS had an (undetected) heart defect (not ToF) and had his repair when he was 5.5 weeks old. We were in hospital for 2 months after he was born.

He has a genetic condition which was diagnosed after he was born. He is doing great from a cardiac perspective now, although has other challenges.

Do you have access to a specialist cardiac liaison nurse who can tell you what the treatment pathway looks like? My understanding is that the outcomes for ToF are quite good, although I am sure it must seem very scary at the moment.

Moreteaplease84 · 16/02/2020 19:18

@ILoveMaltesersIDo
That is a great outcome,thanks for such a positive post! It's made me feel a bit calmer about oa xx

Original poster

RoseFarm · 16/02/2020 19:48

@ILoveMaltesersIDo Thank you so much for getting in touch, your message really made me feel less alone. I am a great believer in talking when times are tough and I would love to take you up on your offer to point me in the direction of more support. It's nice to see there's a community out there.
I'm so glad that you have all had a happy outcome, we are still awaiting further results but praying for our chance to have this chance x

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Original poster

RoseFarm · 16/02/2020 20:04

@AshGirl Hey, we are based at LGI who have been amazing so far. Which hospital are you at?
We do have a liaison nurse at Leeds who I have a lot of questions for, just want to get the amniocentesis results back first and get our head round the facts of everything. Feeling really in limbo, this weekend has been so difficult for us both.
I'm so sorry to hear that you had some problems that weren't detected on a scan but so glad they were resolved for you. It sounds like the heart specialists in our country are fabulous and can work miracles. X

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Original poster

RoseFarm · 16/02/2020 20:06

@BobbyGentry thank you for the link. I am going to sign up to the forums there and see if we can find others in a similar situation to talk to. Thank you

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ILoveMaltesersIDo · 16/02/2020 20:16

@Moreteaplease84 have you looks at the charity TOFS (Tracheo-Oesophageal Fistula Support)? They're great, loads of info, regular newsletters and there's a private group on FB. As it happens TOF awareness week is coming up at the end of this month. We do have some issues around texture and difficulty sometimes swallowing past the scar tissue, which is perfectly normal and you just get used to it.

ILoveMaltesersIDo · 16/02/2020 20:17

@RoseFarm I'll drop you a PM if that's ok?

sallysparrow157 · 16/02/2020 20:20

LGI cardiology and cardiac surgery teams are fab (I worked there a few years ago and had a lot of dealings with them!) and I’m sure the cardinal liaison nurse will be able to answer all your questions and also potentially put you in touch with families who have been in the same position as you.

Moreteaplease84 · 16/02/2020 20:50

@ILoveMaltesersIDo yes after days of frantic googling when we found out a couple of weeks ago,I found the TOFs Facebook group which has been helpful if a little scary as there are some babies on there that have gone through a really tough time. I have crazy Polyhydramnios (had 5 litres drained 2 weeks ago and this is when we got the diagnosis) and I think I need to have it done it again,have an appointment with Fetal medicine tomorrow so we'll see. Its making me worried theses something else going on as my fluid is so extreme.
@RoseFarm hope you find a supportive group,you can always talk to us too. As my baby will need surgery after birth and be in nicu,I've heard bliss is a good site to look at. If you end up in the same boat,hopefully they can be of some help to you. Fingers crossed you get your results through soon and that they give you some positive news xx

Original poster

RoseFarm · 16/02/2020 20:58

@sallysparrow157 That is good to hear too, they have been nothing short of great so far even though it's just the start of our journey. X
@Moreteaplease84 I will take a look at Bliss. Keeping everything crossed for you as a family xxxx

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ILoveMaltesersIDo · 20/02/2020 08:10

@Moreteaplease84 how did you get on with your appointment? Whereabouts are you?

Hope you're doing ok @RoseFarm x

Original poster

RoseFarm · 20/02/2020 08:29

@ilovemaltesersido
Hey, we got initial results back from the amnio and they are all clear which is such a relief. Still waiting for some more results which include Digeorge Syndrome, which is commonly linked with ToF. Got an anxious wait for that phone call next week now but we're definitely feeling more positive. How are you doing?

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FreezerBird · 20/02/2020 08:42

Hi @RoseFarm

My little girl, who is 11 now, had Tetralogy of Fallot picked up at our 20 week scan. It was one of a number of anomalies detected so we had amnio, which was all clear. She was diagnosed with CHARGE syndrome at 3 years old.

She had her cardiac repair at about 9 months old and since then other than yearly followup (which is always more than a year in reality) we barely think about her heart condition. It gets mentioned to anaesthetics when she goes for other surgery and that's about it.

She has a lot of other medical stuff and learning difficulty going on but she's a happy, healthy and completely bonkers 11 year old.

It's quite possible that she'll need further surgery in her teens as the repair (particularly to the valve) might not grow with her, if you see what I mean. I think it's likely that there have been developments in surgical techniques since she had hers.

Moreteaplease84 · 20/02/2020 12:02

@ILoveMaltesersIDo I'm near Middlesbrough,my appointments are at the rvi in Newcastle as that's where our baby will be born. Appointment went ok thanks,had another 3 litres of amniotic fluid drained and they're still concerned about the size of his chin.
Still waiting in the rest of our chromosome results,it's been 3 weeks tomorrow :/

ILoveMaltesersIDo · 20/02/2020 15:23

@Moreteaplease84 we're RVI too, those are some hospital corridors I am very familiar with! You'll be very well looked after, both in the hospital and in the accommodation at Crawford House (I'm presuming you'll get a room there if your little one is in SCBU for a while). We didn't have the genetic tests until after birth but I think it took about 6 weeks for the results to come back.

Moreteaplease84 · 20/02/2020 16:35

@ILoveMaltesersIDo yes I'll be staying at Crawford house,going to be so hard because I have a toddler who I am never away from so I just know I'm going to feel so torn.
They have been fab at the the rvi,they're lovely. We haven't had genetic tests done yet,we're just awaiting the array chromosome results,they said 2-3 weeks and it's 3 weeks tomorrow! My husband is calling them today because I'm too nervous.

VirtualHamster · 22/02/2020 18:55

One of my friends has Tetralogy of Fallot, she had repair surgery as a baby and then a valve replacement in her early twenties and has recently given birth to a daughter. She has regular checkups but has led a very normal life. She was born 40 years ago and I'm sure there have been improvements in outcomes since then.

AndNoneForGretchenWieners · 22/02/2020 19:03

My stepson has ToF. He had numerous surgeries as a child and was in and out of Birmingham Childrens Hospital for most of his childhood. He is 39 now and has just had a new valve fitted. He is unable to do any manual work, but has had children and a relatively normal, although not quite so physical, lifestyle. DH's exW couldn't cope and left, leaving DSS with DH, but he managed well.

Hope you are ok.

mardim · 25/05/2020 14:14

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 in my midwife, she said let me google it... Thank you for reading my message

mardim · 26/05/2020 03:04

@Moreteaplease84 what happened to your little one?

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