5 year old open heart surgery - any experience?

[SellMySoulForMoreSleep]

Hello everyone,
I wondered if anyone has any experience of their young child having open heart surgery? My 5 year old boy has a large hole in his heart which can not be repaired through keyhole surgery so he is having an open heart operation at Great Ormond Street in October. I am generally ok about this, it is a straightforward operation (as far as open heart surgery goes!) and he is in a brilliant place with brilliant doctors etc. As the date gets closer I am starting to feel more anxious about it (I am quite anxious about a lot of things) and I just wondered if anyone has any experience of this and can offer any reassurance or even advice? Thanks.

[ColdCottage]

I know this is an old post but rather than start a new one has anyone had a just 3 year old go through OHS and what was their recovery time? Also how did you explain to them what was going to happen and when? Thanks

[opinionatedfreak]

I wouldn't tell them too far in advance and I'd just tell them that the doctors need to fix their heart because it isn't working very well (do they have any symptoms - this can sometimes help).

There are leaflets etc to help with preparing for an anaesthetic (look at patient info on the royal college of anaesthetists web page) or your hospital might have stuff available on their webpage (we and many other places have a video to help prepare children for admission - I suggest putting the name of your hospital into youtube to see if anything comes up.)

Birmingham children have one especially about cardiac surgery.

Might also be worth watching some hospital themed TV (eg. Get well soon) or reading some books (beware kids books tend to be fairly unrealistic about medical stuff - e.g. the doctor in Peppa pig is always doing house calls). There is a list here: www.littleparachutes.com/subcategory.php?sid=25

It has been a while since I looked at them and can't remember which one I liked best....

[opinionatedfreak]

But tell her something. Trying to explain to a kid on the day of surgery that they are having an operation when they didn't know virtually always ends up with a really upset child.

Also despite the fact that you will be massively worried you need to try to keep it bright and reassuring for your child. They really pick up on parents anxieties. I would try to plan to have someone with you and something to do while you wait until the operation is finished. As the hanging around imagining every awful thing that can go wrong is horrendous.

[ColdCottage]

Thank you so much. This is really helpful.

I am very lucky, I will have my DH with me and so many friends have said they will come and be with us during the surgery, whilst he is in CICU and then to visit - he is a popular boy so might have to have a rota so it's not too much.

Thank you very much for replying.

[Ourmiraclechild]

I know this is an old post but rather than start a new one wanted to know how things are going for your little ones after OHS? Glad all went well for them. Any advise or things you would share regarding your experience as a parent. My 6 year old boy is due for one this summer at GOSH. It came as a big shock to us when a doctor found a heart murmur & after doing an echo found that my son has a bisucpid valve with is leaking & needs to be repaired. Getting anxious about the whole thing. Please advise. Thanks

[ColdCottage]

Hi. My son had his op (hole and valve fixed in partial AVSD) in June last year a month after his 3rd birthday.

I was prepared for a 2 week stay and we were discharged after 3 days. He would have gone home on day 2 less than 36h after op but he then got a temperature.

GOSH staff were so lovely. Our nurse was called Dimple who was so nice. We actually bumped into two GOSH nurses from the ward in Budapest in October who were working on the ward when we were there (it was easy to remind them as a celeb came into the ward one of the days).

The pre op stuff was fine, the two hardest bits for me where when they put him to sleep (I held him and they gave him gas) not because it's bad just because it was hard leaving him to have his op.

The garden by the hospital is nice. We sat there and read in the sun, went for a drink and dinner to keep our minds off it. He went down at 2pm and was finished at 5.30pm and we could see him at 7pm

When he came round he was still on the ventilator and was fighting it which was probably the hardest bit for me. So they gave him more sedation and we stayed with him until 1am.

The house you stay in when they have the op until they go on to the ward is SO hot.

He moved from CICU at 5pm the next day on to the main ward.

The ward is warm too but is temp controlled so ok. We were there over the heatwave in June last year. Leggings and a long top are perfect comfy clothes to wear and easy to get into bed and cuddle up to them with.

An iPad was really useful for us. We borrowed one and downloaded nowtv which was good for him and me.

The main ward is really nice as you have your own room and bathroom.

There is a microwave and fridge on the floor too and the on-site food is nice. I packed loads of food to cook as planned a long stay. Think if I did it again I would pack snack food and squash but would buy meals in the canteen and fruit from the Tesco nearby.

My son only has positive memories of the hospital and his scar is barely visible just 8 months later.

Feel free to pm me any questions. Happy to chat on the phone if you want.

[Ourmiraclechild]

Hi I know this is an old post but rather than start a new one wanted to know how things are going for your little one after OHS? Glad all went well for him. Any advise or things you would share regarding your experience as a parent. My 6 year old boy is due for one this summer at GOSH. It came as a big shock to us when a doctor found a heart murmur & after doing an echo found that my son has a bisucpid valve which is severely leaking & needs to be repaired. Getting anxious about the whole thing. You did mention your little one had a leaky valve. Did they repair or replace it? What procedure did they do? Any tips or advise pre and post operation? Thanks

[ColdCottage]

This is a photo of my son at 3 year olds 1 week after open heart surgery and 8 months after surgery. It's amazing how you can hardly see the scar now.

Hope this helps one who has just had a diagnosis for open heart surgery.

[Gymlove]

Has anyone been told that their child might need the Ross procedure for valve replacement ? My little girl (3.5 years old) has subaortic stenosis which was removed 2 years ago and has recurred. They said if the membrane is in an awkward position they might need to damage the aortic valve to access/ remove it (but this is a plan B).
Wondering if anyone has had the Ross procedure and their experience - was it a longer recovery period ? Hoping that they only need Plan A !!

[Ronnie2014]

My 4 year old grandson is due to have open heart surgery at Great Ormand Street. I'd like to know if anyone's child has gone through this, is there anywhere for parents/grandparents to stay over night? We're also unsure of how long he'll have to stay? And does anyone know if there's a children's book specifically about heart surgery that we can read it to him?
Thank you in advance

[ColdCottage]

Hi @Ronnie2014 yes my son had it at 3. There is a really good book by the heart foundation which the gave us when we went to visits GOSH before the surgery.

There was also another one I found online and then donated back to the hospital where our consultant is locally (Oxfordshire)

[Ronnie2014]

Thank you so much for your reply. Can you remember what the book was called? Also what's the procedure? Will my daughter have to take my grandson to GOSH for a consolation first? We live in Norwich so we're far away. Are there any hotel's that parents/grandparents can stay at with affordable prices? Anything you could tell me I'd greatly appreciate

[ColdCottage]

I went up to visit on my one to decide between there and Southampton.

When you go up they provide accommodation for parents and child the night before (you will have pre op checks that day). Prior to this your appointments will be with your local consultant I assume as GOSH is far from you like it was for us.

Once the child goes in for the op parents are given accommodation again but in a parent only location (all about 2 min walk from the main entrance if that) and come the child comes of CICU then one parent can sleep in the ward with the child. The rooms are very nice on the Ward with en-suites and lots of space.

Family accommodation is also spacious and had cooking areas. The parent only accommodation is a bit smaller but still fine. Even with the June heatwave of June 2017 when it was over 30 degrees we just about survived. GOSH has air con. Once the child is on the main ward then the parent accommodation is not provided so a second parent needs to book a nearby hostel or hotel.

There is a guide to local accommodation which you can use. My husband stayed one night in the local hostel which was very basic but he literally just slept there and had all his stuff in our sons room with me (not much).

There is loads of storage in the GOSH ward bedrooms. I had two suitcases - one full of food as thought we would be there for up to 2 weeks. In the end we were sent home on day 3 along with the other little girl who had had the same op. The teen who came in for the op went home on day 2. We might have gone home day 2 but DS had a temperature so they kept him in one more day.

There is a Sainsbury's it Tesco local just 5 mins from GOSH and the food is well priced and tasty from the canteen.

There is also a microwave and fridge just outside the ward for people to use. But given a ready meal is about the same as one from the canteen I'd use the canteen which has bigger portions and is nicer (I'm very fussy, I work in hospitality).

The hardest parts for me were watching DS being sent to sleep and even harder was watching him struggle against the ventilator when he woke up. Fortunately they give them a drug similar to the date rape drug meaning they don't remember any of this. My son only really remembers eating rice crispys.

We did find it hard getting him to take the calpol they had - he usually likes it but didn't like the one they had and it made it difficult to get him to take it even when we got the strawberry own brand. Might be worth taking own brands you know they like just in case. Same with ibuprofen.

We borrowed an iPad for DS to watch during recover and downloaded the nowTV app which I had on my phone so good for both of us. I also got a 2m long charger cable which was very useful so you could be in bed/chair and charge the phone at the same time.

[ColdCottage]

Book called:

Tomorrow I Will Feel Better

By Helping Hands

[ColdCottage]

Sammy's Heart Operation

www.bhf.org.uk/informationsupport/publications/children-and-young-people/sammys-heart-operation

[Ronnie2014]

Oh my goodness thank you so much for your in-depth reply I truly appreciate it. As I'll be there with my daughter and not Ronnie's dad....he has to stay behind with Ronnie's sister....I wonder if my daughter and I will be given the parent accommodation? Yes we're in Norwich in Norfolk so a good 100 miles or so. You wrote so much in your reply I can't remember it all but rest assured I'll be reading it over and I can show my daughter too. Once again thank you so very much
I will google the book titles you have suggested thank you

[ColdCottage]

My pleasure. Please feel free to ask as many questions as you want. Pm me if you'd like to chat. Happy to speak. I've chatted to another mum before. I know I had so many questions when it was me.