Pacemaker in 3.5 year old?

[StrawberryFields2023]

Hi all! I was hoping to get a bit of insight from the Mums/Dads out there who have experience with with their child having been in need of a pacemaker, the surgery and aftermath involved as well as how the daily life looks for a toddler/child with one fitted? My son has a complete heart block, diagnosed at the 20 weeks scan during pregnancy. The treatment involves fitting a pacemaker once the heart slows down to levels where normal development may be at risk. So far, he is unpaced at 3.5 years of age- but the consultant says that he will need one soon, most likely in the next year (or max 2). Because he is so little, the leads of the pacemaker cannot be attached via the intravenous route but have to be fitted to the outside. This involves a relatively major surgery and recovery in hospital for about 1 week, followed by around 6 weeks of no creche, no exercise, no lifting arms above the heart- I am quite anxious about this period as essentially all the things he likes doing involve one of these no no's. (running around, dancing and jumping, climbing, rolling cars on tables and kitchen counter bringing his arms way up, playing and running around with his friends in creche). Apart from that period, once he has the thing fitted: risks are dislodgement of the leads- any guidance here how easily this happens? what about blows to the where the pacemaker is embedded that are supposed to be avoided of course? The doctors generally suggest that the children lead a normal life, but to me, it seems it will strip him of a huge part of normal activities- such as taking part in birthday parties with blow up castles or attending them in indoor playgrounds where part of the activities involve climbing and falling over all the soft objects around. A million ways on how to accidentally get hit in the belly. Any guidance/help/reassurance?

I don't have any experience no but hopefully this will give your post a bump

Thanks so much!!! Pretty rare, this (1:20.000), so am not holding my breath but hoping anyway!!

Hi MorrisonC69- oh no! Such a shock!! So very sorry about this - the worry. The fear. I found out during pregnancy, so I have known for a long time and I still felt very fragile when the time came for a pacemaker. Totally unfounded as you will see. This will be a long one as I will tell you everything I know. First off: it's all good. Really. Your little one will be able to do anything- as you know and as he has. Nothing will change there, he is still your active happy energetic little boy and if you feel worried, look at him. Do not listen to that anxiety, look at him and feel better! They are right when they say to treat him normally!
There is no drop in life expectancy, as far as heart defects go: this one is treatable straight forwardly. You can forget about it for large amounts of time. Another word: This is due to auto antibodies in the Mum. I am guessing she(you?) Is asymptomatic and you will most likely be that forever/for a long time to come. But please get yourself checked for anti-Rho/anti-La.
To your question regarding when it is pacemaker time: every hospital is different, but here (Ireland) they checked every 3 months at first, then 6 month to 1 year in a clinic (2h check up, ECG, echo- although I think the echo was due to a small hole that closed up over the years) weight and growth check. And then a 24h holter monitor (at home, seems annoying, isn't- just get the clip on thing for the little cassette so the wires and all can be neatly tucked away- so your little one can run freely). That allows them to see a baseline heart rate and establish the drift downward. I should stress it is unfortunately impossible to predict when the hear rate drops below a certain point and can happen all of a sudden (not reassuring) but most get caught w check ups. Look out for fainting or seizures (eek) but again: this is not life threatening and as scary as it sounds AND HIGHLY UNLIKELY. The important thing is: you know he has CHB, he can get treatment quickly if needed!
Now, the cut off: here- below an average of 50bpm during the day and approx 3sec without a beat at night. With wriggle room. Every hospital has a different cut off though.
We didn't notice a problem really when they said it is time, but have to say he HAS more energy again now after the pm. They checked us every 3 months again in the last year.
Regarding the statistics: I've been told without seeing the studies that around 50% will need a pacemaker before teenage years, about 50% after. the other question: why not now? Once they can go the intravenous route for a pm, it's a short procedure. They need bigger veins for that (from roughly 30kg) And the pms are different (i can explain what i know if you like) For him, it was a longer procedure as he is still little- an incision in the belly (10cm), 2 days in hospital, 2 weeks at home. It is full anaesthetic for the procedure- so if you can avoid that: great.
I think it tells you about the general risk they assign your kid to: he is safer how he is now, than exposing him to the risk of surgery.

Now the annoying bit: because he has a heart defect, a rare one, it is difficult to get seen in standard hospitals if he has a cardio vascular illness (colds, flus, coughs, fevers) so just go straight to the hospital w a heart centre if you can. From now on, that's where you need to go as all others will just be unsure about what to do with that weird ECG trace. Hmmmm. Anything else?
Before or after pm surgery there has never been a hint from anyone regarding us having to be extra careful of his little heart- so- impossible, but: try not to worry. There are multiple forums and stories online from ppl w CHB and pacemakers and they all are the same: never stopped them from anything. Some point out that they were grateful for their parents never making an issue out of it! maybe that's our lesson? Anyway. Big big virtual hugs to you and your family. Be alright :).

Another note: I read my original post again and that was after we had spoken to a doctor that had no clue. He was not the pacemaker surgeon and he put the fear of God in us, as you can see in the post above. He made it sound like a huge deal and it just wasn't at all- and I am genuinely shocked and angry still about the scaremongering information we received from multiple sides,clearly not knowing CHB or pm procedure for little ones but speaking up anyways.
So: neither the recovery of the procedure was as difficult as I feared in above post, nor are the activities after restricted. In and out of indoor play areas no problem!!

Thank you so much for that reply. Really appreciate it!! I will send you a pm later when I have a bit more time if you don’t mind! Thank you again, it has put our minds (a little bit) at ease :)