9 yr old scheduled for pacemaker

My daughter was diagnosed with bradycardia at 7. She has complete heart block. Now her cardiologist thinks it is time for a pacemaker. He wants to have the leads sewn onto her heart and implant the pacer into her abdomen. I guess this is a fairly common surgery, but the thought of my little girl going through this has me tied in knots. The surgery is scheduled for June 6. I guess I'm just looking for a little reassurance. This is hard for the whole family. No one wants her to have to go through this!

11 Comments

kids

by Tracey_E - 2013-04-25 10:04:55

I'm sorry your daughter needs a pacemaker! Yes, it's common. Yes, lots of kids have come through it just fine. But she's still your baby! We have a handful of members who have been paced since they were children, hopefully one or more will chime in.

Until then, I can tell you as a kid who grew up with the same condition that it's a lot harder on the parents than the kids. I don't remember before I was diagnosed. My parents never let on how nervous they must have been, never treated me like I was fragile. They said God made my heart special and I really didn't question it, it just was. Kids don't worry, they don't think things through like adults. They tend to bounce back quickly and move on.

If we have to have a heart condition, we have the best one to have, imo. Our hearts are generally structurally normal and healthy, they just have a short circuit. Our own pacemaker, the sinus node, works like it should so we only need the pm to complete the broken circuit and tell the ventricles when to beat to stay in sync with the atria. Simple fix.

I am 46 now, on my 4th pm, healthy and active with two teenagers of my own. I own a business, am a girl scout leader, hike or ski most vacations, do Crossfit every morning. I look like all the other moms! It's kind of fun seeing the shocked looks on faces when people find out I have a pm. I don't let it keep me from doing anything I want to do. Your daughter has a bright future, too. I know it feels huge now, but this is just a little bump in the road. Prayers for all of you that it goes smoothly.

Epicardial implant

by golden_snitch - 2013-04-26 03:04:33

Hi!

It's my understanding that this type of pacemaker placement is usually done in babies or toddlers as their veins are too small/narrow to put the pacemaker leads in. However, at the age of nine I'm wondering, if your daughter doesn't already qualify for the much less invasive procedure with transvenous leads. Have you done some research on this or got a second opinion?

I have my pacemaker leads placed the way they are planning to do it in your daughter; the pacemaker itself however is below the left collar bone. That's because I had some issues with my vena cava superior and can now no longer have pacemaker leads in that vein. I had a "normal" pacemaker placement before, so I can tell the difference between these two surgeries. The epicardial lead placement is much more invasive, needs a longer time to heal, is more painful (though pain is of course something that can always be managed with medications).

Now, I really don't want to scare you, but if I were you, I'd talk this over with her cardio or heart surgeon again, and see if there isn't a way to place transvenous leads. There are special leads out there with a smaller caliber (I think they are made by Medtronic), so that they fit into small veins. Pediatric heart surgeon told me about them, and said that they need a special catheter to place them, so it takes a little more time, but it's worth it as epicardial leads have some disadvantages (lead fracture happens more often, for instance) compared to these transvenous leads.

Best wishes
Inga

Diagnosis is a Gift

by jeanine@streamlinersinc.com - 2013-04-26 06:04:28

I'm so sorry to hear that your little girl has to undergo surgery! There's likely nothing worse than to see your child suffer and struggle with uncertainty.

I struggled as a child with issues surrounding heart block - fainting spells, mild seizures, etc., which prevented me from 'normal' childhood activities. I began having grand mal seizures at 24 years of age (Stoke-Adam's syndrome) which nearly went undiagnosed. Had I not had the miraculous good fortune of having a technician doing an EKG on me DURING a seizure, I would not have been diagnosed with heart block, and would likely be in a vegetative state or dead.

Next year I celebrate my 30th anniversary of my pacemaker implant (I've had several generators, lead extraction/replacement surgeries, etc.). I am a marathoner, business owner, mother of two, and live large, knowing that my diagnosis was the greatest gift in my life!

Embrace your daughter's diagnosis, do your homework on pacer models, placement (mine is now in my brachial artery, submuscular), and stay away from neighborhood hospitals! Find a teaching university who will not just do a pacer implant (implants are viewed as very routine), but will actually create a long-term plan of care for your daughter.

I can speak for many pacemaker patients when I say that most of the pacemaker surgeries and surrounding care are in what I call the 'rear view mirror' of where our lives are headed.

Godspeed to you and your family as you embrace her diagnosis and find peace and comfort in great care.

placement

by jonie.pierce - 2013-04-26 09:04:08

We have discussed both options with her cardiologist. He believes that bc she will need pacing her entire life this is the best option to avoid depleting her veins. Her veins will come in handy when she is much older. Now she is young and will heal more easily vs depleted veins and implanting it this way later in life and having a longer recovery.

thoughts are with you!

by deargirl3 - 2013-04-26 09:04:33

Hi my name is Lisa. I also have a daughter that will be haveing a pacemaker put in on may 10. she broke her arm this time last year and while being put under to have it reset the doctors found that her heart rate was very low. We took her to upmc in pittsburgh and they confirmed she has complete heart block. for us the fact that they can not tell us how this happened is hard. she has always been healthy. We have already been threw so much in our family. My now 13 year old was diagnosed with cancer when she was 8 it was a rare typ for a child to have. she was only the 7th child in the last 8 years to be diagnosed with it. I just thought I would let you know that I understand the feeling you are having because I to have them. I just know that we are a strong family and will make it threw this and so will you! Please stay strong and our family will be parying for your family!

btw THANKS!

by jonie.pierce - 2013-04-26 10:04:01

Just thanks, it's so nice to find this community of people. Going through this is overwhelming. I am thankful I have somewhere to ask questions!

Daughter with pacer

by Jamben - 2013-04-29 04:04:56

My daughter has had a pacer in her abdomen since she was 6 months old, she is now 14. She had to have another big surgery when she was 12 and they kept it in her abdomen. It is fine. Let the veins get bigger. They will move it one day, they say maybe when she is 20 or 21. It is not a problem. She plays travel soccer, Middle School soccer, volleyball, and plans on playing in High School. Kids are tough, she was playing 8 weeks after her last big surgery that she had for an enlarged heart, and a new pacer. No need to put a lead in the vein if the vein is small, they will move it when it is time.
Best of luck.
Bob

young PM patient

by Caroline270965 - 2013-04-29 09:04:06

Hi
Just to let you know I had my PM fitted aged 21. I thought that was quite young and my Mum was more scared than I ever was.
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 jonie.pierce - 2013-04-30 09:04:41

Again, thanks for all of the encouraging posts. It is wonderful to hear your stories. I realize the pacemaker is most definitely a blessing!! Praise the Lord for doctors and these devices that can help my daughter live a healthy long and normal life.
@ Lisa - my daughter's cardiologist suggested having an EKG done on our other 3 children to rule out heart block in them too (they are all fine PTL) He said that complete heart block is often associated with the mothers antibodies and that usually the mom has an auto immune disease such as lupus.. I have also had appointments with a rheumatologist to be checked for anything going on with me. Seems the mom's antibodies in utero zaps fries and sizzles that electric part of the infants heart which leads to complete heart block. Not in all cases but 95% I'm cleared for now and healthy but it is something I will have to keep an eye on, as rheumatoid illnesses rear their ugly head whenever they decide to I guess. How old is your daughter with the pacer? Jordee just turned 9.

Understand

by Wendy72 - 2013-05-02 08:05:36

Hi. I have a son who is now scheduled for his 3rd pacer. We were diagnosed at 4 months with 3rd degree heart block. Congenital of course. The pediatric cardio took one look at me and said "you have lupus, that's the only way a child is born this way". And BTW i am positive lupus, i was 18 when i found all this out. I have had 5 test for auto immune things and shows it every time. So we watched and monitored till he was 7. At 7 his heart rate at night went to 22. We had surgery at Vanderbilt. He done great. Felt so much better and quit throwing up all the time. He had been one to throw up at every meal while trying to digest food. We had the 2nd pacer at 14 and now he is 22 1/2 and just found out today this battery is almost out so the next one is now scheduled. My 2nd child didn't have the heart issue and neither did the 22 year olds little girl. He was 7 at the first one and they implanted it in the left side above heart. We had waited as long as we could to try and avoid the belly implant. The 2nd pacer the same scar was opened up and inserted. Good luck and yes have the other kids checked. Easy way to kinda check them is count their pulse at night when they are asleep!!

She will do great! :-)

by PaceMomma3 - 2013-05-07 09:05:00

My daughter is almost 5 and has complete heart block. She was diagnosed when I was 22 weeks pregnant. She had her surgery at 4 days old. It is also placed in her abdomen. The surgery was about an hr long. Im sure your daughter will do just fine :-) Children heal very quick. My daughter is having hers replaced on tuesday cuz the battery is drained.

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My pacemaker is intact and working great.