My 4-year old daughter has had a pacemaker since three days after she was born. I always tell her not to put any pressure against her abdominal area (that's where the pacemaker is). For example, to avoid spinning on monkey bars, or kicking or excessive pressure from anyone into that area. She sees other kids doing all the things she is supposed to avoid and she does not like it.
I have not explained to her in detail what is inside her and its purpose. How should I tell her? I am not sure what her response will be and how she is going to react. Is there something I SHOULD tell her or something I should NOT? Do you have any ideas?
Thanks,
Ada

 

 

I think the longer you wait to explain it to her, the harder it will be. Does she have av block? I was diagnosed when I was 5 so I remember the first trip to the cardiologist but don't ever remember not having a heart condition or not having restrictions on what I was allowed to do. That was in 1970 and they didn't give kids a pm unless it was a last resort so I wasn't allowed to do any sports or strenuous activities. It was explained to me that the top and bottom of my heart don't beat together. My parents said God makes us all different- blond and brown hair, blue and brown eyes, tall and short, and he gave me a special heart. Her special heart has a special tiny computer to fix it but she has to protect that computer. As she gets older and asks more questions, you can fill in more details.

There are going to be times she doesn't like it, no way around it. I remember more than one tantrum because I wanted to play soccer or take the harder dance class. But I also remember everyone fussing about running the mile in gym class while I sat at the finish line with the stop watch timing them. It wasn't all bad! I learned a life lesson earlier than other kids- you don't always get what you want. Sometimes it wasn't fair but life is like that. I had a happy childhood and I think I'm a well adjusted adult. I think being a little different made me stronger.

Something my mom did that I think helped keep things in perspective for me was volunteer work. Collect books and take them to the childrens hospital, things like that. That showed me that not every kid was born perfectly healthy (what you start to think when you're the only one sitting out) but that other kids were a lot worse off than me. Four is a little young for that, but keep it in mind when she's a bit older.

There is a yahoo group for parents of kids with pm's, a lot of other parents who've been there. I think it's heartblockkids, but if you do a search for "yahoo groups" among the old posts here, it should come right up.

An aside to you.... I'm 43 now and on my 4th pm. I have two daughters, I own a business, I work out and hike and ski, I'm a girl scout leader and active with the school and animal rescue... I never sit still and I sure don't let a little thing like a wonky heart slow me down. I turned out fine, and your daughter will too :o)

 

As with all children of that age keep it simple and truthful. Short sweet and to the point. Kind of like (sort of - but good enough for a child) a light switch that turns on a light. In the heart there is something like a light switch that tells the heart when to beat. Your daughter's is "wonky" to use Tracey's term. So the device helps her heart not be "wonky" - the light will always turn on - the heart will beat. Just an idea. Then let your child lead you with her questions. Answer truthfully and honestly but keep it short sweet and simple.Hope this helps. Good luck !!

 

When my daughter was diagnosed with Obsessive-Compulsive Disorder (OCD), I kept approaching it like she had something "special". Tried to keep it more a positive thing. Now she's an adult and has told me a few times that helped... a lot.

 

My son had seizures. Almost 2 yrs ago he underwent 5 brain surgeries. He was 5 and is now 7. He also has what is called a VNS. It is smaller than my ICD, and is connected to the nerves in his neck. His sends a shock to his brain...and interrupts seizure activity. It was VERY hard not to be overprotective. We just let him know what was ok and what wasnt and why. It is never negative...just kinda a fact of life...for him anyway.

His Drs said...Let him be a kid!! They want him to enjoy life and say he will know if something hits the VNS the wrong way.

The teachers and nurse at his school know and are VERY protective of him. He still has a nickle size hole in his skull....so the PE teacher watches him close and he is not allowed to play everything. He understands and is doing wonderful.

Kids are much better at all this than we are!!
+++++thoughts coming your way!
Andi

 

Hi Ada,

I was born with a congenital heart defect, so I've known about it all of my life. My parents were very good- just basically said my heart didn't work as other peoples did and that was why I felt tired and couldn't do as much. However they allowed me to limit myself which was the best thing they did for me. As I got older I naturally asked questions and they answered me honestly.
I have 3 children myself and have had to explain things to them. I have always been honest and simply told them that my heart didn't work properly and given them honest answers as they've got older.
As Andi says kids are much more resilant than we give them credit for.

Vicki

 

My daughter just recently had her pacer put in. She was three. She calls it her heart and enjoys telling everyone about it. She knows it is there and just goes about her life. She is careful but not overly careful. She is very active. She rides her bike and goes sledding. When she started school I was more worried about her breaking her arm and a week into school she had to get stitches in her head because she got pushed. Krissy is very aware of when her pacer is going off. The doctors say people cant feel it but she seems to. Sometimes she will grab her chest and sit down ans say her heart is running. Funny how little kids see things. We also have a baby doll with a pacemaker. It is too cute. It zips up and shoes the inside with a heart and a pacer. She loves that doll.

 

I was 1 when I got my first pacemaker, I am 24 now, so I have always been aware that I had a special heart. My parents went about it as it being something special. I even looked forward to doctor visits, because it meant my mom and I could spend part of the day just her and I. I always thought it was cool I had a pacemaker doing the work for my heart, I even brought my old pacers in for show-and-tell on several occasions. Kids are curious so just answering questions truthfully but so they can understand is good. I am still asking my mom questions about my heart defect, and we still go to my doctor oppointments together. When I was younger I always played sports (soccer and swimming mostly) the only thing I wasn't allowed to do, to my knowledge, was be goalie. the younger you start explaining it to her the easier it will be for her to accept, eventually she will learn to love it.

 

I would like to Thank each and everyone of you for you input and time to repsond to my questions. I will talk to my daughter this weekend; I am hoping she will not break down.

To answer some of your questions, my daughter has a complete heart block and it was diagnosed since I was pregnant on week 22. She was born on the 33rd week.

Again, I am extremely grateful to all of you.

Ada

 

My daughter had her pacemaker placed at age 2. I have told her she has a pacemaker in her belly (and show her the area with my hand) and its a small computer that helps her heart work. I compare it to daddy wearing glasses to help his eyes see, great grandma using a cane to help her walk, so she doesn't feel like an outcast. I tell her that just like mommy's computer, you have to be careful with it so it doesn't break....so she has to always protect that area of her belly. She knows she can't slide on her belly or lay over monkey bars on the playground. She also knows to speak up to friends and her sisters about not hitting her or sitting on her. She will say outright "don't do that, you'll break my pacemaker". Her friends just accept it and she is open with anyone that has a question about it. She's very active and of course, I know she's only 3 and could somehow break a lead or something while playing, but I feel better knowing that she understands that she should protect herself....and if anything feels wrong, she can tell someone she has a pacemaker (I also have her wear a medical id bracelet)