Why Can't I Play On That?
"No, honey you can't jump on a trampoline. The doctor has told you that it will jar the wires of your pacemaker for you to jump repeatedly, or to jump down hard on the ground or floor." Have you seen the look on a child's face when he or she has been told that they can't play on something other children are having such fun on? It is not a look that I like to see. Disappointed is not enough to describe the look because the child knows that it is not a temporary situation it is a permanent condition. Children are resilient though, and helping them to understand their condition is the best way to help them.
My grandson has two (2) pacemakers only because the baby pacer could not be removed when they implanted the adult pacer. It would have been too stressful and painful on him to remove the first pacer, so they left it for a back up. Good thing the doctors did because the wires to the adult pacer broke and we would have lost him if the baby pacer had not kicked in to keep his heart beating. We thank God for insight for him.
He is the only child I know personally that has a pacemaker, so my experience will be from what I have helped him go through. It has been very hard for him at times to not be able to do things other children can do. When he started at a new school they had never had a child with a pacemaker. They had someone follow him every where he went. He was so upset he said: "They wouldn't leave him alone." They were so afraid he would get hurt they had someone go with him everywhere. They finally got used to the idea that he is not that fragile.
He can't play contact sports like football, soccer, and even basketball which is something that boys really like to play. Because he could be hit on his pacemaker. Jumping on a trampoline was his favorite, but when he jumped down like his brothers were doing it jarred and broke the wires. He had to be rushed to the hospital to have the pacemaker replaced. No fun there.
We have had to worry about wires breaking from the start almost. He was almost 2 years old when he had his first open heart surgery. Two years later in testing his pacer from the phone the cardiologist called and said we had to get him to the hospital right away. When we got there we were told his heart rate was way too low, and that one of the wires was probably broken. There are so many children with broken hearts that he had to stay in ICU for 3 days before they could even schedule an appointment for his pacer replacement surgery. It is so sad to see all those children, and a lot of them even worse than my grandson.
Adapting To Life With a Pacemaker
My grandson is now 14 years old, and has pretty much adapted to life with his pacemakers. It used to be hard on him, and he would have night mares especially of having to be rushed to the hospital. He had passed out and had convulsions one time, he doesn't remember that time. Someone had to sleep in his room for about a year for him to adjust again. He does know that he could go to sleep in death, but we have addressed this. He is confident of the resurrection hope, and of the good news of a new cleansed earth where we can all live forever. Only through our Christ Jesus mighty name. There are a lot of issues with children who have heart conditions and pacemakers. With talking to the child and being honest and helping them to come to grips with what is wrong with them they will understand. Helping them to get through the times when they get afraid is really important. Always remember that you remain calm with them.
Helping someone who has a child with heart problems is so important too. Treating them normal is the most important thing anyone can do for these children, and helping them to know how precious they are. Letting them know we need them is so important also. That they can live as normal as any other child they just have to adjust to their situation.
Precautions That Should Be Noted.
There are not a lot of precautions with a pacemaker just make sure that testing is done on time, and make sure to keep heart appointments. Like with my grandson we had no idea his heart rate was low other than he wasn't active like a 4 year old would be. The testing will let you know what is going on with your child's pacemaker and heart.
Make sure your child wears a medical identification bracelet or necklace to let others know about the device in case of emergency. When he or she is old enough to have a wallet, it is a good idea to also carry an ID card.
We were never told that my Grandson should wear an ID, so make sure if you know a child with a pacer they have their ID.
These days we don't have to worry about a microwave or normal things of that sort. The things that we need to be aware of are an MRI, airport check points, and things of that nature.
My Baby Boy Has Gone to Sleep in Death :~(
In updating and rereading my article I thought I would let everyone know Zech has gone to sleep in death. That has been the hardest thing I have ever gone through. I have been putting this off because of my pain. He was pronounced dead on March 1, 2019.
He had been staying with his step sister and brother for a while. He had come back home to be with us. He was 20 years old. When he was cleaning up the yards he was so happy. He had been working in the yard to help my mom.
I was on my way back to my home when my daughter called me frantic. She had found him laying on the ground. I rushed back. When I saw him lying there my heart broke. I screamed at my daughter give him resuscitation. She tried the best she could, but she hadn't had any training. The fire department arrived first. They got his vitals back. I could tell my baby boy was gone. Tears are steaming down my face as I remember this horrible scene. February 28, 2019.
He was rushed to the hospital. The hospital did all they could to revive him. The nurses were wonderful, but they knew he wouldn't be back. They were very kind trying to help us cope. We wanted to be hopeful. One little young nurse was very kind trying to let us know there wasn't hope for him to wake up. She didn't come right and say it, she was trying to be lovingly kind.
My daughter had to make the hardest decision of her life. To let the doctors take him off life support. Only love for her handsome son gave her the courage to let the doctors take him off life support. I sat by his side for all the hours I could while he was on life support. I knew that the baby boy I had raised for most of his life was not there with us. My heart is breaking now as I write, but I had wanted to update this article. Every little noise around me sounds ten times louder than it really is. I am having a really hard time writing about this.
I will see him again in the resurrection. I really miss him he was my buddy. He and I helped each other so much. He really loves me I know, and he always wanted to live with me. Not because he didn't love his mom because he did love her so much. But, because he and I had such fun living. Growing things and helping each other. I can't walk much so he was my legs mostly. Getting me things that I needed, and bringing in groceries, and things. I love this kid. He is my heart. (Tears streaming down my face.)
Until the resurrection I will wait patiently for this wonderful handsome young man to be back with us again. To never hurt again, and never experience the awful things that satin's world has to offer. A world where there will be no more death, or pain, or any need for hospitals. Only almighty God and his son Jesus can right the awful things that satin has done. Man can never right this world no matter what he does.
Nancy Moore (author) from Lakeland on May 19, 2015:
Thank you so much (Svetlana) Crystal for coming here and sharing your story also. There are so many children with heart problems, and also a lot of other problems too. When we were going thru all of this and still do to a certain extent I noticed that there are so many children a lot worse off than my grandson which is sad. You are so right about God not giving you more than you can handle. If not for God, and his son Jesus I don't even want to think about where I might be now. Take care my dear friend Crystal, and I would love to talk more with you. So sorry I just now saw your comment I hope you get to read my answer to you.
Svetlana on February 14, 2015:
that he feels so much better, his brain was not geinttg enough oxygen. The batteries need to be replaced about every 10 years, we thought we still had 7 to 9 months, but it surprised us. The battery triggered low but we did not know until he had a pre-syncable episode. The pacer keeps him from full syncope (passing out). The day of surgery they were taking their final read before wheeling him in and they couldn't get one because they said the battery was completely drained! We got it down to the wire. There are different reasons to get a pacemaker. Jason has a genetic disorder, not actually a heart problem but more of a wiring problem in layman's terms. Jason is missing the light switch, which tells his heart to beat faster when it slows. Which really is great, the doctors say that he can manage his whole life as long as we keep the batteries up! It could always be worse, and I believe that you make the best of the cards that are dealt to you and god does not give you more than you can handle.Thank you for sharing this information. I would love to tell you and share more about other disabilities! Talk soon and take care!Your friend,Crystal
Nancy Moore (author) from Lakeland on February 21, 2013:
Wow, thanks for sharing this with us Tirelesstraveler. I know I was really very dismayed at the amount of children with and born with heart problems. It was/is heart breaking every time we have to take my grandson for his check ups. We have to check his pacemaker every month to make sure everything is running smoothly. It can get tiring. Well, thanks again for sharing. Take care.
Judy Specht from California on February 20, 2013:
Wow. Don't know any kids with pacemakers, but do know a teen with a defibrillator. His brother woke up in the middle of the night to the dog howling and pawing at him. Brother was trained in CPR and started it immediately all the while yelling for help. Turns out there is syndrome where the heart just stops. The defibrillator starts it again. Now when his heart stops the hospital calls him to alert him to an episode. There haven't been any calls for nearly a year.
Nancy Moore (author) from Lakeland on February 20, 2013:
thank you so much for commenting. I really appreciate what you said I hope that this information will help someone.
wood on February 20, 2013:
hi nancy i really like the article,,,very nice ,, this will help a lot of the kids
Nancy Moore (author) from Lakeland on February 16, 2013:
hotkevin on February 16, 2013:
more grace to you
Nancy Moore (author) from Lakeland on February 15, 2013:
Thank you Mary and for also the encouragement for Zech.
Mary Moonwalker on February 15, 2013:
Hey Nancy i really enjoyed the article..it will help other children a lot. Zech i admire your strengh and ambition. Just always go for your dreams. There are no boundaries My uncle also had a pacemaker when he was young and he has 3 doctor titles today.
Nancy Moore (author) from Lakeland on February 07, 2013:
Hey, my baby boy, I love you so much. Thanks for commenting on this article. Didn't know that you were going to. Thank you for letting me talk about you here, and maybe this will help others who are going through this too. I love you grandson, too
Zechariah T Moore on February 06, 2013:
☺☻♥ Hay grandmother how are you doing i just heard about this site and it is great for you to talk about (me) I Love You grandmother.☺☻♥
Nancy Moore (author) from Lakeland on February 06, 2013:
Thanks so much Jody for this information. I appreciate you so much you do such a great job with Zech. Thanks for the site people can check on. Take care and look forward to our next appointment too.
Jody on February 06, 2013:
It was a pleasure to see you and Zech today for his pacemaker interrogation. ( check). I really enjoyed your article ! I would encourage y'all to find activities that he can do that are non contact- but would keep him excercising such as tennis , swimming or biking. Feel free to go to and / or to refer people to www.medtronic.com for patients section for free educational information. I look forward to seeing y'all again.
Nancy Moore (author) from Lakeland on February 04, 2013:
Thanks so much Julia, I appreciate what you said. It has been a tough road sometimes, but Zech makes my life enjoyable. I hope others can gain some help from this article.
Julia Bargeron on February 04, 2013:
Nancy, I truly appreciate this article. It is so informative and I could tell it was written by someone who had experienced first hand what having a child who has serious heart conditions can be like. This article will benefit many who have been searching for answers you have already found. Excellent writing!