Hole in the heart babies

[Mumpbump]

My sister has a 3 week old baby who has been diagnosed with a small hole in the heart. The doctors say it should close by the time the baby is around 2 months old, but is there anyone who has been in this position and can offer reassurance?

TIA...

Yep my DS had a hole in his heart and it closed up by the time he was 6 months old. He has a heart murmur too, which is also quite common and nothing to worry about. These things sound scarier than they actually are.

my baby cousin, i was 20 when he was born, had a hole in the heart, diagnosed at 2.5 months. the gp who heard the murmur was gobsmacked that he had been allowed out of hospital at birth. it was called tetralogy of fallot.
he was operated on two weeks later, and came home two weeks after that. the operation meant his life expectancy increased from five years to fifty, or normal. he is now a healthy happy normal, if skinny teenager doing his gcse's.

not quite your nephews situation, but, reassurance. it may seem like a nightmare situation. but a foetus will have a hole in the heart, this usually closes up before birth. her babies just hasnt closed up yet, and if they doctors are confident, then i will hold on to that thought.
lots of positive vibes

Our wee boy (11 wks) was diagnosed at 2 days old and we've just had our second appt with the cardiologist. He said he wished it was either bigger or smaller - if it were bigger he would put him down for surgery straight away and it would be dealt with, if smaller he would tell us just to go home and forget about it as it would close up on its own. As it is he says we'll just have to wait to see if it gets any better, but in all likelihood we'll have to face the decision about open heart surgery at some point in the future. He explained that it does NOT manifest as a weakness in the heart when they are children, unlike in adults, it's just that the heart doesn't work as efficiently so he will need more energy, i.e.food, but in all other respects the heart will function perfectly normally. Important not to treat them with kid gloves apparently as that could do greater long term damage to their health and fitness. He also said the surgery is less complicated and therefore risky the older the baby gets as the heart is bigger and easier to operate on. Sounds like you've every reason to be optimistic about it closing over tho' so try not to worry too much. Hope some of this info helps.

Hiya
We were told our DD had a heart murmur when she turned one!! Sent for tests and turns out she has atrial septal defect (large hole in the heart). We have been told she will need surgery or catheterisation when 4 but have been told they are procedures carried out all the time and not to worry. Our child is very active (bounces all the time and can't stop running) and we have been told to continue letting her do this, no further damage can be done. To see her you wouldn't think she was in any way ill. Keep optimistic, thats how you get through.
My friends child has also been diagnosed but with a small hole in the heart which they say will close over in time itself so tell her to try not to worry even though its easier said than done.
S

i was born with a hole in my heart they said would close. maybe it did and maybe it didnt, but it is there now. apparently theres a little whooshing sound in between my beats.

good news is, theres absolutely nothing to worry about. (in my case, no idea about others).
in fact, when i moved here and obv changed gp's, he sent me for ECG scan just to be doubly sure as i was pg... and yes, its there, but its no prob at all. no treatment, no cautions, no advice to act any particular way, nothing.

i am A-OK with my little hole and its whooshy sound.

hope thats reassuring

Thanks for that BoysOnToast, that's really good to hear!!

yay, i made someone smile!

Thanks so much - I will send a link to this thread to my sister!!

DS had VSD at birth - not picked up until he was 1. It was a large hole, but had catheter test and it was decided to let it close on its own.

DS now 12.5 and in good health. Last appointment about 18 months ago, and hole has nearly closed over, and they won't ever operate. He can't have piercings or tattoos and has to be very careful about keeping his teeth clean as otherwise could get endocarditis.

He was small as a baby, and as a youngster, but suddenly grew at about 10-11, and is still going strong. My theory is that energy used in closing hole, is now diverted to the rest of him. It's difficult, but don't stress...most of the time I forgot he had a hole except for when he got a cold and got a wheezy chest.

My dd was born with a VSD, detected antenatally during scans. She was monitored from birth. At 4 months, it became apparent that it was a Big hole and was operated on forthwith. She is now fixed. Surgery, though open heart, is as routine as heart surgeries go.

The irony is that she never had a heart murmur. It is only smallish holes that produce murmurs. Hers was so big the blood was just sloshing freely between the chambers. She was much perkier after the surgery.

We were told that ds had a heart mumour at 24 hours old

19 months later they told us that it was Trialogy of Fallot
He had the operation to fix a large hole in his heart and widen his pulmory artery at 21 months
He is now a very nearly 8 year old, we have to take him for checkups every 2 years and every doctor we go to see likes to listen to his interesting heart

Saggy (we have similar names lol) that's quite a delay before diagnosis for TOF

dd also has an interesting heart - she didn't have a murmur at all until she was in end stage heart failure. Confused the doctors completely.

Yes Saggar we were told that at the hosp, because he was a big boy 9lb 4 and thrived quite well he didn't have his echo till I went to the doctors and said that when he walked he kept squatting down.

The docs sent notes to his consultant who then arranged the echo that for the past 18 months they had been saying yes we well get it done but there are babies who need it more than him!

The only good side was that once he had been diagnosed they moved damn quickly to get it sorted!!

Yes Saggy - dd's weight (10lb) rather went against her too. No-one (except the HV ) took any notice when she 'settled' through the centiles until she hit the bottom one and finally had true weight loss.

A dose of bronchiolitis and a chest x-ray soon put their butts in gear. Shame she'd had two heart attacks by this point

Hope your niece is doing OK mumpbump - hopefully the hole will heal by itself. I'm sure the docs will keep a close eye on her. And if it doesn't close, they can fix many holes by catheter these days so no need for 'open' surgery.

Blimey Saggar sometimes things I hear about heart babies amazes me!! You really would think that the weight loss would point out the problem!

mumpbump I hope that your niece is doing well xx

My dd was born with what they said was a really small VSD (hole in between two chambers)

9 months later they realised she was working much harder than she should have to to breathe, and she had a cardiac catheter. That showed the hole was a lot larger than they realised and she needed surgery. She was put on the waiting list, and an agonising 7 months later at the age of almost 18 motnhs she had surgery and recovered really quickly - she was running around after 3 days!

She is now 6 and completely fixed