Heart defect

[Ronnie2014]

My 4 year old grandson is due to have open heart surgery at Great Ormand Street hospital soon. I'd like to talk to other parents/grandparents who have been through this

Do you know the type of surgery? What I say his diagnosis as there is a huge range from relatively simple and routine (although it doesn’t feel like that to the family) to very complex surgery.
Most children do very well though.

He has a cleft in his heart which is a small hole that needs stitching together

Well that’s the good news. It’s not one of the more complex conditions that are very difficult to treat. I haven’t been at GOS for many years but even then the little ones with these conditions did well.
GOS is lovely. Almost completely rebuilt now with some of the most advanced equipment in the world.
What are you particularly concerned about? What unanswered questions do you have? How old is your grandson?

In the absence of a more current poster, I’ll have to do for the time being.

Well that's good to know it's more common than not. I'd like to buy him a book that are aimed for children having to go to hospital for heart surgery if possible. I'd like to make the trip with my daughter. However I don't know if he'll have an appointment to see a doctor to explain everything and be sent home for another appointment for the operation? We live a long way from GOSH, do you know if there's an affordable hotel for family to stay whilst the child is in hospital. Any advice and reassurance will be gratefully received

They have good family accommodation. There’s a Ronald McDonald House with flats for families of children who are inpatients. Lots of support to ensure families are supported. Most wards have facilities for parents to stay overnight but not the intensive care units. There are parents rooms away from the intensive care units where parents can stay.
It might be useful to look at their information for parents on the website.
www.gosh.nhs.uk/information-patients-and-their-parents-or-carers. Cut and paste into your browser.
There are plenty of hotels nearby but not all are cheap. There’s a few around the £100 per night but might be worth asking hospital if they have any deals with local,hotels or look at Airbnb.
There are a few travelodges around. I’ve stayed in the Kings Cross one and whilst a bit grim from outside is OK inside. Plenty of reasonable places to eat at the newly developed Kings across area. It’s a fifteen minute walk from GOS but Kings Cross and Farringdon travelodge are about £50/60 rather than Covent Garden which is nearer £120.

He’ll probably have to be seen as an outpatient before he’s admitted to ensure he’s fit and everyone understands what is going to happen.

There are lots of books available- just use google. Tipsy and Tim, Pepper Pig, Franklyn and many more. Lovely idea. The play facilities are incredible and children usually recover and are up running around really quickly.

This link to surgery for ‘holes in heart’ might help. www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/ventricular-septal-defect-vsd

Oh thank you so very much for your reply it has answered the questions I had. My daughter would like me to be there with her whilst Ronnie is in theatre and he'll also be put into intensive care after theatre. I've just been looking on their website re accommodation. My daughter....by the looks of it....will be given a bed in the hospital, so it's important for me to find reasonabley priced accommodation for myself. I'll only spend the one night there whilst he's in theatre definitely and hopefully until he comes out of ICU dependent of course how soon he'll be taken to the ward. I'll no doubt find out more when he's given an appointment in outpatience. I've ordered a book for my daughter to read to him. Once again thank you so much for your help and advice I very much appreciate it

Delighted to help. Intensive care will look terrifying and the wait whilst he is in theatre will be the longest and ever but you soon forget about the tubes, the bleeping and the machines and just see the child.

My daughter has already experienced the long wait as her 2 year old daughter had to have a shunt put in her brain....twice because the first one stopped working....which is common apparently. She was there alone both times at Addenbrookes which is why I said I'll go with her to GOSH. Ronnie will be almost 5 when he has the op so will be far more aware of what's going on bless him. My daughter will need me beside her. Once again thank you so much you've been amazing

Sounds like your daughters been through the mill already. Hard to be a granny sometimes, I suspect. Five is good in some ways. Old enough to understand explanations but too young to be really traumatised.

If the weathers reasonable there’s a lovely little park just around the corner called Corams Fields which is entirely secure and a nice first outing. There used to be a few pets there but they’ve probably long since gone.

Yes she has bless her and all on her own which is why I really want to be there for her to lean on. Her daughter is too young to understand so it's making her really nervous knowing how aware Ronnie will be bless her. Thank you once again. I've screenshot our conversation and will send it to.my daughter so she can read it

If it’s just going to be you and your daughter it would be worth checking if you can share a room in the family accommodation - not sure what the rules in GOSH are but where I work we would allow one other relative to stay if the parent is a single parent (or if the other parent is at home with other kids, but the parent staying wants someone to support them)

If you have any questions or would like further details on the accommodation we offer, you can contact the Family Accommodation department on 020 7813 8151 or email [email protected] with your query.

(From GOSH’s website)

Yes I'll email or call them tomorrow to ask about accommodation for her and I as dad has to be at home with his sister. My daughter says thank you as well

I would like to wish him all the best.
I am 35 years old who has a heart condition called Tetralogy of Fallots and had open heart surgery at 4 and again at 29.
My condition has never stopped me from doing anything and now have a 5 month old girl.
I am fit and healthy and exercise. ( keeps the heart stronger)
Hopefully this will give you reassurance.

Well so far you have given me extremely advice, helpful hints and tips. I will write certain bullet points to make sure I can fully understand the things I NEED to understand like family accommodation for both my daughter and mysel. I'm glad you're fit and healthy. So I'm guessing you remembered it?
Btw how did you come.across this site? It's been invaluable to me so thank you

Don't remember much when I was 4 but remember having those finders keepers dolls and diluted orange juice for some reason.
Apparently I was going up and down the ward with a trike the day after surgery as climbed out my cot with wires still attached ha ha. (I was a bit bonkers and determined, still am to this day 😜).
Now I'm a parent I feel sorry for my folks with all the stress I put them through, not just once but twice as I caught a heart infection the 2nd time.
Medicine has improved so much over the last 30 years and the surgeons carry out the surgery on a regular basis. Your wee boy will recover well.

Best of luck to your grandson! I'm so glad your daughter will have you there with her.

Just wanted to say best wishes. Make sure you and mum eat before he goes down; I can confirm hitting the floor after fainting isn't pleasant!

Awww thank you so much for your message. I think the worst part for my daughter and I is when he goes under as at 4 he's aware of everything. He's never been one to cry if he falls over etc. However my daughter and I had to take him to hospital for blood tests. Poor little mite cried so much because it took so many attempts to find a vein. I hope that doesn't happen when he goes into GOSH. Thanks once again

Omg I hope I don't faint 😷
Thank you to all of you who have sent me messages I really appreciate it 💜

That's good to hear happydays1993 glad you're fit and well.
I'm a little confused about my replies getting to.all who have messaged me
But thank you so much all of you

Ronnie has a Cleft in his mitral valve has anyone's child have this please and thank you

My grandson Ronnie has a cleft in his mitral valve, has anyone any experience of this? Please and thank you

My grandson Ronnie has a cleft in his mitral valve, has anyone any experience of this? Please and thank you