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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To wonder if your baby had a hole in their heart?

50 replies

Feelingabitscared · 07/01/2022 10:39

Hi, just looking for some reassurance.
20wk scan yesterday showed a suspected VSD, have to wait until Monday to have it confirmed by someone more senior at a different hospital.
I’m trying not to worry but just wondered if anyone has been through the same and everything has been okay (or not)?
I’d appreciate anyone’s experience of this, we didn’t really get given any information and I’m trying not to Google too much but my mind is racing.
I feel so guilty, I feel like it must have been something I did or didn’t do. Said I’d put it out of my mind until Monday but I just can’t think about anything else.

OP posts:
Ponoka7 · 07/01/2022 10:42

My niece had the same with her baby. By nearly two the issue had corrected itself. If it hadn't then surgery would have been an option. The surgery has very high success rates. It isn't anything that you've done, just like the parents of disabled children didn't cause their disabilities. That's quite offensive.

dotmckee · 07/01/2022 10:49

Hi my little girl also had some congenital heart defects picked up at the 20 week scan, and she ended up having heart surgery at 9 days old. Now you wouldnt know she is any different from any other 18mth old
It is really scary being told there is something wrong with your baby's heart, but thankfully modern medicine is amazing and there is a lot they can do these days. I would really recommend Tiny Tickers - they are a charity for children with CHDs and their families. They have a Facebook group for parents which was a great source of support while I was pregnant.
Fingers crossed for you and your little one.

Crowdfundingforcake · 07/01/2022 10:50

DNiece had a hole in her heart when she was born. Fixed itself very quickly, she's now a 20 year old at university, a dancer, always on the go.

It's nothing you did, just one of those things. SIL was really anxious when they found out about DNiece but the doctors were very good at setting her mind at rest.

I know it's hard, but step away from google.

MadisonAvenue · 07/01/2022 10:56

It was noted that our son was born with a hole in his heart, we weren’t actually told but he was in SCBU and read it on his notes. When we spoke to the doctor he said that he expected it to need no treatment and would fix itself, and it did so very quickly.

He’s now almost 25 and is at this moment teaching a class of Year 10s.

Buttons294749 · 07/01/2022 10:57

My friend was born with a hole in her heart and had surgery very young (this was 1980s) shes now a very healthy 34 yo. I have a feeling there was another girl in my class who had similar and was also fine x

persister · 07/01/2022 11:03

I was born with a hole in my heart and was a quiet and sleepy baby. It healed itself by the time I started school and I had a completely normal life. I'm now in my 60s, energetic and active, run several times a week.

babyblackbird · 07/01/2022 11:11

My son had a hole in the heart ( ASD ) which wasn't actually picked up until he was 7. It needed surgery, which he had and he has now been discharged and lives a perfectly normal life.
No point telling you not to worry as I'll be honest it was the worse 3 months of my life when he was diagnosed and then waiting for surgery, BUT, doctors kept telling us that it was v "routine" from there point of view although appreciated that it obviously wasn't routine for us !

His hole was so enormous they were surprised hadn't been seen on scans ante natally !

DeepaBeesKit · 07/01/2022 11:12

My daughter has something called patent ductous arteriosus but it's quite small and doesn't give her any problems that we are aware of. They might close it when she's older.

babyblackbird · 07/01/2022 11:12

Should also add that it is "relatively" common and a lot close up by themselves in the first few years

TangfasticsAreFantastic · 07/01/2022 12:00

My DSis was born with a small hole that healed itself up without intervention.

My DN had one that was undiagnosed throughout the pregnancy but required surgery when she was born. It wasn't diagnosed until 6 weeks old. At that time she'd put on a small amount of weight since birth but after a doctor heard a murmur he'd sent her to the hospital for checks. After draining her lungs of fluid it transpired that all her weight gain was just in fluid on her lungs, bless her.

She then had to be stabilised and gain weight before they would operate, so had to be tube fed for 4 months until she could have her op. Operations are only done at a few specialist hospitals around the country - GOSH, John Radcliffe and Southampton are the ones I know in the south. Despite it being a worry at the time, the operation is totally routine and now, 8 years later, you wouldn't know she'd even had it done - she's almost the same size as her sibling who is 2 years older. Her scar is practically gone too.

If your baby has a hole OP then it's excellent news that it's been picked up at this stage. They will be able to monitor carefully and closely and, if baby needs an op, it can be planned for when baby is ready for it, whether that's shortly after birth or a bit later.

Clarich007 · 07/01/2022 12:06

Hi OP.
It's entirely understandable that you are worried, but these answers sound reasssuring.
Bit different, but my Mum was born in 1924, with a hole in the heart, the doctor thought she would die. She was born at home.
She recovered with no treatment, as far as I know, and went on to live a normal life, had 2 children. She lived to be 91 and died in 2015.
Good luck.

Sharingplatter · 07/01/2022 12:15

My youngest was born with VSD. She had 3 small holes which closed up on their own in time. She had monitoring from birth. She’s 13 now and no issues. Please try not to worry. It’s nothing you have done wrong.

BabyLove22 · 07/01/2022 12:20

@Ponoka7 oh get off your high horse. The op is clearly upset and wasn't accusing the parents of disabled children, it's a normal feeling to feel it's your fault and it isn't offensive at all!

mummyh2016 · 07/01/2022 12:25

@Ponoka7

My niece had the same with her baby. By nearly two the issue had corrected itself. If it hadn't then surgery would have been an option. The surgery has very high success rates. It isn't anything that you've done, just like the parents of disabled children didn't cause their disabilities. That's quite offensive.
Of course it's nothing she has done but it is perfectly normal for her to feel this way, I think most if not all pregnant women would feel this way if told there is something potentially wrong with her unborn baby. Who are you to make the OP feel bad for stating it out loud Hmm
Wildrobin · 07/01/2022 12:30

Dd had multiple holes and some quite big and was monitored a long time but they closed enough by about 8 years old to not need an operation. It’s never affected her

Original poster
Feelingabitscared · 07/01/2022 13:35

Thank you all for your reassurance, I can’t tell you how much better I feel after reading through all of your posts. We will deal with whatever comes our way, just as all of you brave people have. Thank you Flowers

OP posts:
Knitter99 · 07/01/2022 13:53

My brother. He's 39 now and an Iron-man triathlete. He didn't need any surgery, he had lots of hospital visits when he was small, just short check-up type visits, and an occasional overnight when they wanted to monitor him for a longer time. I don't know the details of how they picked it up or monitored it back then but treatment must have massively improved so your lo stands a great chance.

I hope you get lots more support and info to help put your mind at ease for the rest of your pregnancy.

trying29 · 07/01/2022 13:59

my son has a VSD. he is 4 - it hasnt closed but it is being monitored regularly. it wasnt picked up prenatally. He is very active although quite small in stature for his age

Pellewsmate · 07/01/2022 14:00

My DS(13) was diagnosed at birth, it was not picked up on a scan, as his heart grew the hole closed, no sign of it by 18 months.

Cgar2018 · 07/01/2022 14:07

It wasn’t picked up on any prenatal scans but my son became very unwell around six weeks old. He was admitted to GOSH for bronchiolitis and it then transpired after an echo he has a rare congenital heart defect called aortopulmonary window.

We were prepared for open heart surgery but thankfully the surgeon thought he could patch the hole via keyhole which worked.

Whilst being a horrendous 3 week hospital stay, I’m still extremely grateful to GOSH for spotting this and fixing him. He’s 3.5 years now and you would never be able to tell he had any issues. He’s so full of energy.

If you need any reassurance or a chat do DM me xx

Nevilleneville · 07/01/2022 14:12

Myself and my daughter. Picked up at birth. Both had corrected themselves by the time we started school. Lots of hospital visits but no surgery.

My daughter still has a bit of a murmur when she is unwell but she is full of energy and the picture of health. She’s also 99th percentile for height so it hasn’t stunted her growth. We are both competitive athletes too.

GertrudePerkinsPaperyThing · 07/01/2022 14:13

Hi OP

My dd (now 13) was born with a large VSD. She also had a double outlet right ventricle (the arteries were both on the same side) which meant the operation to repair both was a little bit more difficult than a standard VSD.

She had two operations in her first year. It was stressful and difficult at the time but she fine now. Her heart functions as a totally normal heart. She’s tall and strong and physically very able (she has unconnected asthma but don’t worry about that as it’s not connected).

Doctors were at pains to tell me it was nothing I did or didn’t do - it just happens sometimes.

Please feel free to PM me - I’m happy to be of use to other parents in the same situation.

I remember being told to come back for another scan by the specialist a few days after the 20 wk. It was a tough time waiting that out.

GertrudePerkinsPaperyThing · 07/01/2022 14:14

Oh she’s also top of the class clever! So don’t worry on that score either!

GertrudePerkinsPaperyThing · 07/01/2022 14:15

I also agree that most mums jump to “it must be my fault” even though it isn’t! Not offensive to say you feel this way.

KO81 · 07/01/2022 14:16

It isn't anything that you've done, just like the parents of disabled children didn't cause their disabilities. That's quite offensive.

I think it’s quite clear @Ponoka7 the OP wasn’t suggesting parents of disabled children caused them. Don’t look to take offence when there is none, it’s obviously a worried pregnant woman who’s been given scant information and is seeking reassurance.