My little boy is not perfect after all

[BabyJayne]

Sorry to hear this.

Just thought I would post the brief story of my friend's little boy. They found out at birth he had a heart murmur - and by 16 weeks old this was confirmed to be something more serious (I think it involved a bicuspid valve, and a narrow aorta, but not to sure on the specifics). He had a stent fitted, and then had to undergo open heart surgery when he was about 7 months old.

He was in hospital for about two weeks. He has a scar down his chest as they had to go in through the front instead of the side as they hoped. BUT - he absolutely bounced back to health. He was sitting up and trying to move within days of the op - and within a month was completely back to normal.

It's horrible, and I can only imagine how you are feeling. But they do such wonderful things these days, and your LO is tougher than you think. Keep us updated, and love and luck to you all x

 

[going_crazy]

Hi hun!
What a shock..... I will PM you now, please please feel free to message me. My daughter has several heart defects and they can make up TOF, but they won't diagnose her as a TOF baby as her heart anatomy is unique.

You will have loads of questions, and not everyone will have the answer, but there is loads of support out there. Have a look on https://www.heartline.org.uk/forums/index.php too

And, you will definately learn one thing: Your baby is still perfect, and he will amaze you with his strength xxxxx

 

[skydragonfly]

Hugs, just hugs. xxxx

 

[ttc_lolly]

 

[Louppey]

He's still perfect hun

I know nothing about the condition, but just wanted to offer you lots and lots of hugs

 

[Siyren]

i'll echo what going_crazy said about his strength,
our heart hero's are amazing,
and your little one's spirit and strenght are going to take your breath away hun, these little hero's go through a lot, lyssa's been hospitalised 4 times now, she's not yet 2, she's had 4 echo's since she was born, and various other test, and three ambulance trips, thats more than most have in a life time,
yet this morning she was trying her utmost to convince me that her toy dog is infact a horsie, and needs to sit in her buggy instead of her!- she's a normal little girl, who is perfect, just like your LO

i cant comment on recovery as lyss has not yet needed surgery, (by some miracle her heart is compensating without crushing her lungs, there has never been a recorded case of a child making it past 6 months without neediing surgery) but when we toured great ormond street while i was still pregnant, they made sure to tell us that they provide accomdation for parents who need it, you can visit your child any time other than ward rounds when they are still in CICU, and once they are back on the ward, you look after your baby again with support

hope this helps, pm me for facebook if you have it, and if it would help to see pics of what my little tornado gets up to! x

 

[meldmac]

No personal experience but wanted to give you thinking of you.

Also my cousin's son was born at only 1 lb and had 3 major heart surgeries by the time he was 2. He is 7 now and is a very happy boy who amazes us all everyday!

 

[midori1999]

I am really sorry to hear this.

If it helps, in my experience, the surgery is much worse for the parents than for the baby. My son had a heart murmur and two holes in his heart. They initially said he didn't need surgery, but then at a specialist appointment when he was 6 months old they decided he needed to come in the next day as an emergency for open heart surgery to close the holes.

The op went well and he was only in intensive care for 5 days, and one of those was as they didn't have room to move him back down to the ward. They had warned me he could spend ten days or more on the ventilator alone and would almost certainly get a chest infection (he has Downs Syndrome which complicates things and put him at higher risk of certain complications) but he didn't get one. He was absolutely fine and really did sail through it all.

My son had his op at the Freeman hospital in Newcastle, they have flats there for parents to stay in and give you a pager in case they can't contact you any other way and I think most hospitals operate a similar system.

 

[NewMummyx]

Stay strong hun

My wee man's murmor can still be heard apparently, we are going back in 4 weeks to see if it has closed but if not we are being referred to the hospital xx

 

[sweetcheeks78]

What a terrible shock for you, just wanted to give a hug. I know the thought of an operation is hard but when it's all finished he'll be better and it will all have been worth it.

 

[EllaAndLyla]

to you and your little boy. Hope all goes well!! xxxx

 

[Siyren]

it may also be worth pm-ing aided_honey (i think thats her username, it may be aided-honey)
hopefully she wont mind me suggesting that, but heart mummy's need to stick together, and her litle boy is amazing!

 

[KellyC75]

To you & your Little Boy

 

[brownlieB]

I've got no experience but didn't want to read and run, Just think though although to you it's a shock the surgeon performing the surgery probably does this 100's of times a week.
xxx

 

[bananaboat]

 

[xkirstyx]

xxxxxx

 

[charlotte-xo]

x a million.

 

[evasmum]

Sending

He is still perfect and I hope things go well with the op and recovery.

 

[RHR]

Oh hunny, I'm so sorry. Huge hugs to you. Secondly, your son is still perfect!!!!!! His body is just being unhelpful to him. I don't have any experience of this. However, my brother was born with a narrowing of the aorta and had major heart surgery at 6 weeks old. He has turned out fine, which your son will do too.

 

[hayleyet]

Hugs to you and your perfect little man. Your in my prayers xxx