Infants and children with pacemakers

welcome!

by Tracey_E - 2022-01-31 10:31:21

We have a few parents of paced children, hopefully one will say hi soon! 

Travel is no different than traveling without a pacemaker for the most part. Once upon a time we weren't supposed to go through airport metal detectors but they're ok now, just don't linger. The only thing to avoid is  security wands above the waist. I'm congenital so have been paced my entire adult life. I carry my id card but have only needed it a very small number of times, mostly for government buildings. Security at airports, concerts and shows, courthouses are not a problem. 

parents

by dwelch - 2022-02-01 16:31:21

Yes we have had parents stop by here, and when I joined there was a person who had their first device at 8.  I had mine at 19 and have had pacers for 34 years.   I was a pre-teen when diagnosed and was monitored for several years.  Every time I ask my folks about it, they said they trusted the doc.  And that is what I tell folks here, find a doc you trust and trust the doc you find (if they say pacer you say how soon, if they say pill you say how many).

I know this does not help your situation, I am a parent and know what it is like to have your child in the hospital.

The good news here is that when Tracey_E and I were finding out about our condition, they didnt know what caused it, now not only do they know, but they look for it and other things before birth.  Rather than gamble like in our case (an EKG wasnt something you just had from time to time, certainly not before/during birth).  With CCHB life expectancy without a pacer was basically teenager.  Tracey had a good run without a device as did I.  I am actually quite happy to hear that they did detect somethiing in your child and there is something they can do about it.

There are parents that have come here, there are teenagers that have come to this site, and there are a few of us that are 25-40 years with devices that will tell you that they make your life better not worse, forget what tv and movies say, that is fiction.

I will be thnking about you and your child and I hope that this is the only issue they have and that a device can fix it and they can otherwise have a happy normal childhood and life.

Search the site you should be able to find the parents that came here and maybe sending them a personal message might get their attention. 

Thank you!

by Trishanna - 2022-02-02 05:14:00

Hi Tracey_E and DWelch!

Thanks so very much for your replies. It's very reassuring to hear that I can look forward to seeing my little one move forward to continue a normal life. 

A little background about us, I'm Canadian my husband is French and we live in France. We found out our baby could potentially have a heart condition at the 6 month stage of our pregnancy. We had a great team of doctors following us from that point all the way until delivery and even to this day. 

They gave us every scenario in the books so that we could mentally and emotionally prepare. Which, let's face it, nothing can prepare you for parenthood let alone every outcome of a labour/delivery like ours! 

When she was born it was determined that her case was sinus brachycardia which is the medical term for her heart's natural pacemaker not firing at a normal consistant pace. It would often slow down for a few beats then pick back up again. The hope was that after delivery she would mature enough in the coming weeks and the "glitch" would just grow out of her but it was not the case. Within 2 days post delivery the paediatric cardiologist and her team were very very sure that the best way to ensure her life would continue as normal was to do the pacemaker surgery.

As first time parents we both had this outer body experience getting the news, but it's like a switch is flipped and you think, whatever it takes! Give her the surgery! Whatever we have to do, we'll do it! 

Super long story - short...the team at Necker Hospital in Paris are angels in scrubs! Our daughter is here and thriving because of them ❤️

FYI If ever you are traveling as a paced person and you're in Paris, please know that Necker Hospital is the BEST hospital in all of France if nothing Europe in case of any heart/pacemaker issues. They speak English in case you're wondering and have an international reputation for doing what other hospitals cant/won't do when it comes to cardiology especially kids. 

When we were there (8 days in total) we came across families that flew in from all over the world just to have their children monitored at this hospital.

It was a bittersweet moment in my life, a blessing that my daughter is here with us, playing and growing and being a normal toddler, but the memories of that uncertainty and fear still live in us. 

Thanks for listening ❤️

Trishanna

by Gemita - 2022-02-02 05:43:29

Thank you for the update and Necker Hospital recommendation in Paris.  That is very helpful.  I see it is for infants/children, rather like our Great Ormond Street Hospital in London.  I am so glad you are getting the expert care your little girl so deserves.

There have been a few new members posting over recent years wanting to connect with other mothers with young children with pacemakers and I attach one such link which I hope helps:-

https://www.pacemakerclub.com/message/41467/child-with-pacemaker

kid's point of view

by Tracey_E - 2022-02-03 22:21:26

As a parent now who was once a child with congenital heart defects, I can tell you 100% this is much harder on the adults than the kids. Parents are the thinkers, researchers and worriers. Kids aren't worried about anything that doesn't affect them right now. For many of us, we never remember not having a heart condition so it's our normal. 

Kids are going to see how you react and mirror it. My parents never let on how worried they must have been, it never crossed my mind they might have been terrified until I was an adult and one of my kids got sick. Talk about a lightbulb moment and a wave of gratitude. I knew my heart was different, but I never thought it was bad or somehow less because I was never treated as fragile. I thought cardiologist appointments were the best because I got to miss school and go out to lunch with mom, my friends didn't get to do that!  There were some bumps, some days esp when I was a teen that I resented being different, but overall I had a perfectly normal happy childhood and grew into a healthy well-adjusted adult.