Grandson will need pacemaker

[primy1962]

Hi anyone out there been in same place either a parent or grandparent. My daughter is soon to have our first grabdchild by CS at poss 36 weeks as her little one has complete heart block. This was found at around 24 weeks so as been having weekly heart monitors along with fortnightly hesrt scans. At 28 weeks they also started fortnightly growths scans as growth tailed off too. Last scans were all very positive but we all are finding it so hard to go and but all the equiptment due to the unknown. Some days i feel the real excitment others i feel lost as to how to help them through this as sometimes i feel i need help too.

Have you been told that he will need a pacemaker?

If he has complete heart block it’s likely that there will be additional measures beyond a pacemaker which will also need to be taken but only the cardiologists will be able to tell you that, and in fact their intended treatments may vary as his life progresses.

For what it’s worth, I had a pacemaker fitted in June and I have since encountered many people who are already on their 3rd or 4th pacemakers and are doing well years down the line.

Once the scarring etc heals there is really no difference, in fact you hardly even notice it’s there and it is not life-limiting in any way, and in fact creates reassurance that in the event of the heart rate slowing or speeding up to an extent (depending on the reasons/settings, and FWIW you can get an ICD which is programmed for both, mine is,) then the pacemaker will kick in.

I have had mine for six months or so now and I honestly don’t even think about it being there.

But I would make sure that his parrrents keep constantly on top of the cardiologists and paediatricians to make sure that they are kept in the loop both with regards to his progress and treatment as well as the future prospects going forward.

In my own case my only hope for a long term future is a heart transplant and I will in fact likely have to go on the list within the next year. But in the meantime the pacemaker and some other internal measures have given me back a decent quality of life.

littlehappyhippo

That's not true.

As far as pacemakers are concerned complete heart block is very easy to deal with by inserting a pace maker.

OP

They may initially use a temporary PM which is a box connected to wires that go to your gs's heart.

He will have a 'dual chamber' pacemaker (or possibly a triple).

Complete heart block, also called third degree block means that the electrical system of the tom chambers are not connected to the bottom chambers so the top chamber is not controlling the speed. If you think of an electrical system it's like someone has taken a wire out.

You want the atrial and ventricular rate to be the same (top chambers are atria, bottom are ventricles).

Wires will be fed into both the atria and the ventricles and these will be fitted to the pacemaker.

With babies the PM is often put in the belly rather than the chest.

Because small children have a naturally high heart rate the PM will need to be changed at some point, 5 - 10 years depending on how much it is used and the settings.

The PM will be checked and reprogrammed regularly, for adults it is usually annually unless there are problems / symptoms but with a baby more often.

The pacemaker will sense the electrical activity in the atria and then put a small electric current into the ventricle to make it beat.

The physiologist / technician will program the pacemaker to do two things, one is to make the battery last as long as possible and the other is to imitate normal cardiac activity.

If it is just complete heart block then the programming is really straight forward, but if he develops other problems then the PM can be programmed to sdo thinks like detect exercise and increase the heart rate accordingly.

Guess what my old job was?

OP my DD was diagnosed complete heart block at 18 weeks gestation and monitored thereafter, also due to my pregnancy history, was born 7 weeks early. It may have changed since, DD is now 22, but at the time it was not possible for Fetal Cardiologists to determine if pacing would be needed upon delivery. DD was in SCBU for 7 weeks and monitored but not paced. She has had very regular check ups throughout her life, ECGs, 24 hr tapes, heart scans. So far she has not needed a pace maker. The data now available helps identify when the heartblock is causing too much adverse response in the heart. DD's heart is slightly larger than normal for age, her dropped/missing beats and heart rate are OK for a female of her age with heartblock.
Over the 22 years the knowledge and development of pace makers has changed considerably. Even just the monitoring - as a toddler DD had a cassette recorder attached to reins on her back to know when the recording device is smaller than a mobile phone.

Hope all goes well and you look forward to welcoming your GC.

We have been told that he will more then deff need the pacemaker at birth and the peads will be prepared ready. The are having lots of checks and information given to them untill nearer the time we dont know which pacemaker will be used. You are right littlehappyhippo his top and bottom champers are not communicating due to positive antibodies attacking the electrics of his heart. The people looking after everything are positive as all growths scans are fine his little heart is perfect in every other way.

Don't worry about which PM they are going to use, they may not choose until the day it is fitted.

As well the different manufacturers and models there are practical consideration eg size of actual PM, cardiologist's preference, the physiologist's preference. DOn't be too surprised if a specialist form the manufacturer turns up, these are people who used to work in the NHS and now works for a PM manufacturer, if something new comes out then they go in to hospitals to train the NHS staff and babies are not the usual customers so they may have something aimed at paediatrics that is new.

pollyannaperspective

The old 24 hour tapes, people used to ask us if we listened to them and whether we had to stay awake for 24 hours to do that. The original digital recordings were not very reliable, and the automated opens - I don't know anyone who actually trusted the automated diagnosis.

One thing I should have mentioned, with a baby the PM has to be implanted under a general anesthetic, this is just because it's impossible to keep them still otherwise. In adults it's done under local anesthetic.

Also I forget to make it clear. The reprogramming uses a, well a programmer, which has a what looks like a computer mouse attached. The 'mouse' is actually and electrical magnet, it is placed over the skin and usually over clothes as well and the programming is done by sending magnetic impulses so no operation or even sedation needed.

My DSS is 39 and had a pacemaker fitted as a baby due to Tetralogy of Fallot. I didn't know him then so can't give advice about the process, I do know he spent a lot of his childhood in and out of hospital but that could be the nature of his condition rather than the pacemaker itself. He still has to go back regularly for check ups, has had the pacemaker replaced, and will be having an operation which involves heart catheterization this month. He's had a relatively normal life as an adult, he can't do a physical job but he has had children - one of whom is completely fine, the youngest had the same heart condition.

So hopefully you will see that the long term prospects are positive for a baby who has a pacemaker fitted.

Well our grandson as arrived and is due to have his pace maker fitted he be 4 days old he has been holding his own at mo but dnt know what to expect after op. Not started him on any feeds at mo but think this is all normal. anyone out there been through this at all.

It must be very very stressful and worrying. It's all new to you but the hospital do this all the time and seem to take these big ops in their stride.

Can't help at all on baby PMs but . I suppose it is at least a good thing that this procedure is available. There was a time when it wouldn't have been, and that would be far worse.

Hi there, I just came across this thread! My son has complete heartblock, is unpaced at 3.5 years old but will need a pacemaker soon now as his heart rate is about to fall under the cut off (around 50bpm). Any update or anyone else with insights regarding what is to come? Your story OP made me choke up as it brought back all the memories of finding out about the heart issue, the anguish and scary time during pregnancy, the uncertainty of what will come.i very much hope your grandson and you are doing splendidly and you have many many lovely memories together since his birth in 2019.

Hiya, well I think I covered a lot in my posts a couple of years ago.

PM tech has obviously moved on but the principles are the same.

With complete heart block the atria and ventricles both work but the electrical system controlling them is 'blocked' so it will be one or two leads into each chamber and these will be connected to the pacemaker.

The normal program, if the atria are beating normally is for the PM to sense the electrical activity in the atria and deliver the information to the ventricle(s).

You might need a few visits to get the programming spot on, it is very individual, some people get symptoms, others don't.

It won't be a long op and the only reason for a GA (as I said previously) is to keep them still.

Thank you! Yes the doctors and techs are super calm about this which is very reassuring, thank you so much! However, the recovery is one week in hospital and then for 6 weeks at home, no creche and with recommendation being to avoid sports and raising hands above heart level. The two things he essentially does as part of play all day every day. Also, blows to the belly where the pacemaker is are of course to be avoided- so I suppose I am more looking for the carer perspective and their experiences about complications, lead displacement and how to manage creche and social interactions, are indoor playground off limits now? Etc. I will make a post and see if anyone bites!

The pacing wires have silicone at the end surrounding the bit that does the pacing, these get caught up in the trabeculae - the rough inside of the ventricle, over time it becomes embedded but in the early stages it is possible to dislodge it.

The alternative is to do an open chest with pacing wires sticked on to the heart which is a major operation.

In adults there isn't a lot of 'slack' in the wire but in children there needs to be room for them to grow.

I'd say indoor play grounds are probably not a great idea.

I don't suppose you have any Irish dance classes near? That would be perfect exercise.

A new soft toy / teddy that is about the size of his chest for him to carry might keep his hands below his heart. Also is good to hold onto if he needs to cough.

Hmmm I think we will have the major operation as they say they don't do the 'internal' wires until he is around 30kg (currently at 15kg). Open chest and all..
Yes, I'll make him hold on to his teddy as tight as he can :-(

Sorry i not been on here for ages but we have had such a journey hope your little strawberryfield has gone on ok. Our grandson is progressing well had a rough start with lots of fluid build up around his heart where the external wires were attached. He also had to have his first one replace just before his second birthday due to the battery failing. Since then he has been doing fine he has a monitor reader at home that the hospital use every now and again to check pace and battery. Hospital checks yearly no one would know at all he is full of engery and runs and walks everywhere

Ohhh OP that makes me so happy to hear that he is a happy little boy now but so sorry he had a rough start to life. Thank you for checking in! Our journey is still ahead of us but am glad to hear that yours is a happy ending- again thanks for taking the time to post and give them whee man a huge hug!

@primy1962 thanks for the update.

hope all goes well at your end too they are so special in our case he will be extra special as we only have the one daughter and she has been advised that any further pregnancy would have to be well planned so she has made the decision to not have another.

Thank you! Yes- they are. We decided the same- can't go through that fear and anguish a second time, even if chances of it happening again are low. All the best to you and your family- really makes you appreciate every moment!