Feeling Lost :(

My daughter is having her pacemaker put in on the 10th of may. She is 10 years old and always been very healthy. almost a yeaar ago she broke her arm and had to be put onder to have it reset while while this was going on the doctors found that her heart rate had dropped down to 37. we left one hospital in our area and drove her to UPMC in pittsburgh. There they diagnosed her with complete heart block. They said that they can not tell us what caused this. They told us that she would need the surgery at some point. Just about 1 month ago we noticed she was getting tired during dance and softball also turning pail and not feeling well at all. We took her back to the doctors in pittsburgh and they told us she could not wait any longer. I am very worried for her as is she. IKnow we will make it together through this but its still hard. Our now 13 year old was diagnosed with cancer at 8 yers old so I just do not know how much I have left in me. I try to stay strong but its hard when I feel like there is no one around me to talk to. Im glad my mom found this site cause just getting it out helps.

11 Comments

She is NOT alone

by donr - 2013-04-26 10:04:21

Ther are many members who had their PM's implanted younger than you Daughter, so she is nowhere near alone. I'm sure that some of them will drop in tonight & give you words of comfort.

This is the place to come for answers and support.

You are no different than other mothers facing children getting PM's. MOF - right now - as I type, there is another mother whose Daughter is getting a PM at age 9.

She writes the same anguish as you. Check her out - about 20 posts down the list.

Mom, you have it left in you, you just don't know it. Trust me on this one. That's why you have been made a Mom - somewhere you passed the test that determined that you could handle anything. You even have backup - all of us in here.

In some respects, kids handle these things better than adults. You just give her love & support & she will breeze right through it.

They actually cannot tell you what caused it to happen. It just happened, like a TV set that just up & quit, no reasons given. You are not alone in wanting t know why, but you will never find out because no one knows.

I wish you the best through this all.

Don

strength

by Tracey_E - 2013-04-26 10:04:21

You have all the strength you will need! God doesn't give us more than we can handle even though sometimes it feels like it and you've had more than your share. I'm so sorry you've had to deal with major issues with both kids. Vent with us all you need.

I see you found the other post with the 10 yr old getting her pm soon. I posted more there about being a kid with complete heart block so I won't repeat here but I will tell you a story. When I was her age, they didn't give kids pm's unless it was life and death so when I got pale in dance class, the cardiologist said no more dance. Sports were out of the question and I was an expert scorekeeper in gym class. When I was in college I got a fun job waiting tables, that ended first time I had a Holter and was told carrying the trays was too much. I'm not saying I had a bad childhood because it was pretty wonderful overall and I turned out just fine, but I get a little jealous of kids now. Technology has come so far that they never have to be told to go sit down when they'd rather be playing with the other kids.

We are so blessed to have a problem with a fairly easy fix. I know it seems awful now but once she heals and gets back to being healthy and active again, this will fade and become merely a minor inconvenience you only think about when it's time for a check up.

causes

by Tracey_E - 2013-04-26 10:04:24

Usually it's just a fluke. Do you have Lupus by any chance? That's the only genetic link they've found, moms with Lupus are more likely to give birth to babies with CCHB. Sometimes it is caused by infection, it can develop after other heart surgery, some medications can bring it on, it can come on with age for no reason (NOT age 9, like 40 or 50+). Odds are, though, as young as she is that it's just a fluke she was born with, an electrical connection that isn't there. Our hearts are otherwise perfectly normal, healthy and strong with a little faulty wiring. The good news is we can't pass it on, it's congenital not genetic. Neither of my daughters has it. I didn't think they did but we checked anyway!

Your not alone

by babygurl6378 - 2013-04-27 07:04:07

I am here if you ever just want to chat. I am 34 year old mother that has two sick kids and I have a pacemaker since I was 16 and I just stay positive and take it day by day if you ever need to talk I am here

Daughter pacemaker since 6 months

by Jamben - 2013-04-29 04:04:35

My daughter who is now 14, has had a pacemaker since she was 6 months old. It has not stopped her from doing anything. She plays on a great travel soccer team, played Middle School soccer, and plans to play in High School next year. She also plays volleyball. She has broken leads a couple of times, this is her 3rd pacer, as they will replace it with a newer model if she breaks a lead or two years ago needed a bigger surgery to correct an enlarged heart. Kids are tough, it does not interfer with anything. She know what she can and can't do, but really she has no limitations, She is a normal 14 girl. As a matter of fact up until two years ago, when she needed a surgery that would keep her out of school for 4 weeks, only two of the 18 girls on her team even knew she had a pacemaker, and they had been friends and played together for years. She was back playing soccer after 8 weeks, once her bone healed. They are strong. I wish your daughter luck,

don't be lost

by Caroline270965 - 2013-04-29 10:04:15

Hi
Just to let you know I had my PM fitted aged 21 after having symptoms for 2 years. I thought that was quite young and my Mum was more scared than I ever was. None of family have heart problems so it was a bit of a shock.
Just to reassure you the op is not too bad - feels like someone has kicked you in the chest for a couple of weeks - the bruising looks worse.
I have had 3 pacemakers and am now 47. I had 2 healthy pregnancies and normal deliveries with no pain relief. I trained as a nurse and have worked full time all my life. I have been very sporty and have climbed England's highest mountain. Just to let you know the PM is a blessing not something to worry about.
My only concern was when the time came for a mammogram would they be able to do it and the answer - I found out last year - was yes and it did not hurt.
Wish your daughter good look and happy pacing
Caroline

THANKS

by deargirl3 - 2013-05-04 10:05:04

Thank you every one! We are getting close to her surgery. We went last night and got lots of snacks, some new games and coloring books to keep her busy after. She is still disappointed about missing out on dance recital, softball, her science program and field trip. I just try to keep reminding her of the good that will come! Still its hard on a 1 year old to be told no to the things she loves :(
TraceyE I have not been teasted it was somthing the doctors asked me. I think for me right now i'm afraid to know. They did say the could not understand because it showed up a bit late they said had it of showed up after birth then they could understand. They asked is she had ever been really sick. No she has not. a week and a half ago she got strep and that was the first time she has been on meds for somthing in 5 years. I am at the point where I try not to ask why anymore.
I would like to know nd hae not asked yet. How often will she have to have a new pm put in?

How did it go?

by PaceMomma3 - 2013-05-12 03:05:06

Hey there! Just wondering how her surgery went. I think you said it was on the 10th. Anyways my 4 year old daughter has complete heart block also. She was diagnosed while I was pregnant. I had Lupus antibodies that attacked her heart. Very shocking I have never been diagnosed with Lupus and there is no history of anyone in either of our families with Lupus or any heart problems. She is having her battery replacement on tues and we are nervous but from what I hear it is suppose to be a simple surgery. Most likely your daughter wont have to have in replaced for another 10-15 years however if her leads break then she will have a surgery to fix those. My daughter had her PM put in when she was 4 days old and everything went great however she did get very sick a couple days later the doctor think the PM through her body into shock cuz she wasnt used to having her heart beat so quickly dont worry though that wont happen with your daughter just letting you know our story. I am so thankful my daughter was born in this time and we have such great technology now. Let us know how it went. My daughter loves using her PM as an excuse now not to do things such as cleaning up toys lol. However it doesnt work but its funny to watch. We bought her a medical id band to wear and she loves showing it off to people but they have lots of cool designs. That might be fun for your daughter to pick out. Hope all is well!! Take care!

15 yr. son has pacer

by ryansmom - 2013-06-10 10:06:50

My son had a pacemaker put in at 15mn old he is now 15 yr. old and doing so good, but of course I still worry!I understand your worry and so sorry you've been through so much sadness and stress, our kids are precious and somehow we find the strength we need, I know when my son was born so sick I didn't know how to get through and really just sat and cried while I held him. Ryan had 4 heart surgries before he was 15mn. old and then had an artificial heart valve and pacer put in , he had over 20 plus holes in his heart and was missing a heart valve but he is a tough guy much tougher then me and your daughter will do fine and will most likely surprise you with how she will bounce back and you'll have to hold her back!!May God bless your family !!

Hi

by heart1 - 2013-07-23 01:07:34

My son had a pacemaker put in March 22,2013. He is 12. He was 11 at the time. Your daughter is definitely not alone.. I wish you all well.. Let us know how the surgery went.

your not alone.

by megiemay - 2013-08-22 03:08:09

Your not alone. Im a 14 year old girl and while im not diagnosed with a heart block i have brady/takie syndrome. In 2010 7th august i had a pacemaker fitted s when i was eleven and like your kid i was a healthy child with not a care in the world till i got a throat infection and they took my pulse and found it extremly low. Everything happend so fast my pearents where terrified so was i but i pulled throughwithout a problem and now im doing mysports again and we know it was for the best so that really helps.

Hope you and your family are ok and best wishes for the future xx

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