Looking for similar experiences....10 yo girl - 5 days post PM surgery for Complete AV Block

Hello!

I was wondering if there were any other parents of children on here?

My daughter had an emergency pacemaker implanted last week and because she also had strep, had to wait a bit for the permanent one, which was implanted 4 days later.

She is 10 years old and has complete AV block. She is 5 days post op and we are just trying to wrap our heads around it all and what this means...from recovery, to everyday life, travel, tech use, to limits on fun (amusement parks, sewing, baking/cooking, boating, tubing, etc.), to sports. (She plays basketball, x-country skiis, and is on both swim and mountain biking teams.) 

Just looking for anyone who may have similar experiences as a parent... who is trying to to support and advocate for their child. And as questions/issues arise, others who might have already gone through it and know what some answers are and who can tell me (or help me) to chill, others to bounce ideas/questions off of regarding a young girl who is at the beginning stages of puberty, or others who are also trying to figure it out like me. 

Thank you very much for your time! :)

6 Comments

New pacemaker

by AgentX86 - 2023-08-17 17:35:49

I'm certainly not young but she won't have any problems.  Her pacemaker isn't going to hold her back at all.  Full contact sports (lacrosse?) probably aren't a good idea but nothing on that list will be a problem.  After a couple of months, she'll even forget she has it.  You'll be more freaked about it that she will so let her be a 10YO girl.  She'll be fine. 

What you're going through now will be nothing compared to what you're going to go through in five or six years. Pacemakers are easy.  Teens?!

Welcome

by Gemita - 2023-08-18 08:39:28

Hello Switchback, yes there are other parents with children with pacemakers on this forum and I attach a link which you should copy and paste into your main general browser to open.  You can then contact the member(s) privately if you wish for further support and/or advice.

We all have our own unique healing period following a pacemaker implant, the younger we are when we have our implant, the faster the healing period I suspect and I am sure this will be the case for your daughter.  You might have a tough time holding her back.  Once healed, she will be able to live a normal life, actually a better life without the fear of her heart causing her difficult symptoms or at worse, stopping.

Anyway, have a read of the link and I hope it will reassure you.  I send my best wishes to you, to your daughter and to your family.

https://www.pacemakerclub.com/message/41698/infants-and-children-with-pacemakers

What kind

by cramsay - 2023-08-19 06:34:19

Pacemakers are great extenders of life! 

What kind does your daughter have - if it's unipolar leadless that's terrific.  :)

I'm glad she's over the strep, heart is being safeguarded, and she's ready to roll! 

Welcome!

by Slowdive - 2023-08-19 14:57:02

Hi Switchback,

my daughter will soon turn 9, she got her pm with 6. Complete AV Block, but seems to have recovered (pacing only at 1%). The first year we were a bit cautious with a some things, but now she is doing everything she wants, rollercoaster, horse riding, cooking, tech use .... The only thing that made her problems was long throw at school, it hurt her pm area for 1-2 days. She also avoids crawl swimming.

Do you know the cause of the Complete AV block?

Wish your daughter a quick recovery. And best wishes to you, it's not easy for parents to cope with such a situation.

Feel free to drop me a line, I would be glad to exchange with you.

Pacing since 5 years old

by Nina38 - 2023-08-21 03:46:50

Hello,

I've been pacing since I was 5 years old... I'm 40 now... I'll be honest... I've been able to enjoy life quit well. Was not allowed to play contact sports or go on any crazy rides at six flags but that never bothered me. 
I have the same cardiologist since I was 12 years old :) which has been great thus far. 

Hope this helps. 
best of luck~ 

Hello again!

by SwitchBack - 2023-08-30 15:05:47

Hello Everyone, 

I am sorry for the delay in response.  I can't thank you enough for your support, kind words, and history/info you provided.  It has been overwhelming, more so for me, and reading your posts has all been very helpful and settling. Knowing that many of you have been thriving for many years without any issues will help me sleep at night. :)

My daughter is doing well so far. Today was her first day of 5th grade (and away from me since her PM surgery). But, it didn't phase her much, which was exactly what I wanted.  Don't want this PM to define who she is. She was in great spirts and looked confident and healthy! I was a bit anxious, but better than I expected frankly becuase we already had a sit down with the nurse and she was grea, and I did breakdown and get her a watch which is helping my nerves. So, huzzah to all of that. 

AgentX86 - Yes..I will be more freaked than her and teens are a force! Should be interesting, and hopefully manageable! :) 

Gemita - Thank you very much for the info, support and link! 

Slowlink - So glad to find a similar aged girl! Will reach out to you. 

Cramsay - She has a Medtronic Azure Dual Chamber PM. 

 Nina38 - So great to hear your story.  I think she will also be fine passing on the contact sports and insane amusement park rides.  We try to avoid crowds/lines anyways. :) Although...am hoping maybe we can go to Harry Potter at Universal one day. But if not, we will figure out something better.  Hoping my daughter's EP stays as long as yours!

 

Cheers everyone! 

Thank you again and stay well! :)

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