Hi, When i was 25 weeks pregnant we found out that our baby had complete Heart block. We were told that she only had 30% chance of survival, the rest of my pregnancy was a complete nightmare & an emotional rollercoaster with hospital checks every week to monitor her heart rate. It slowly went down from 60 to 37 bpm when they decided she needed to be delivered at 35 weeks.
When she was born she was rushed to Gt Ormond Street and her pacemaker was put in 3 hours later.
She spent 5 weeks in hospital in which time she got an infection at the wound site and then they pacemaker went wrong ( they say because of the infection) and so she had to have another fitted 3 weeks later.
she's now nearly 8 months old and doing really well, the past PM checks have been ok and they say she'll probably get her next PM when she is 2yrs old..
I on the other hand , am a complete wreck..I worry ALL the time about her pacemaker, no -one has really told us what she can/can't do...what will/wont effect the pacemaker
I worry ALL the time that I will lose her...I dont want to be obsessive in what she can do but then i dont want to put her in any danger...
Can anyone tell me whether tv/stereo speakers will effect the PM and is surround sound ok
Any suggestions on toys she can't have ( magnets etc)
I'd love to here from any parents / or kids who can help me put my mind at rest a little...
I lie awake at night worrying about her and just feel so guilty :(

 

 

I'm so sorry your daughter got off to a rough start. Please do not feel guilty!! There's nothing to be guilty for and worrying is normal, cut yourself some slack. It's not genetic, she can't give it to her kids, you couldn't have prevented it. It just happens, some of us are born without that little electrical connection in our hearts, it's a fluke. We have quite a few teens and 20-somethings here who have the same condition and got their pm when they were babies. All are doing well, hopefully they will pop in and say hi.

I also have congenital complete heart block also. I'm 44 now, healthy and active. When I was a kid in the 70's, pm's were brand new and not routinely given to children so I got by without one until I was an adult. I'm on my 4th now. I hike and ski, I have two children (both born after I got the pm, normal pregnancies), I own a business, I work out regularly, I do a lot of volunteer work... most people don't even know I have a problem with my heart, they just see another busy mom. My pm does not hold me back at all! I rarely give it a thought, it's just a part of me.

Things to watch out for... mostly just magnets but it's not the end of the world to get near one. There's a little switch inside the pm. When they test it, they use a magnet to pull the switch closed and put it in test mode. This is what happens if we get too close to a magnet, as long as we're near it we could end up in that mode with limited function. It might feel funny but it's perfectly harmless and stops as soon as we get away from the magnet. Six inches is the rule of thumb.

Really, any other toy or electronic should be fine! When she gets a little bigger, don't worry about ipods, cell phones, microwaves, Wii, etc. New pm's are pretty well shielded and I've never run into a home electronic toy that has given me a problem.

At the airport, you'll want her to have a pat down, not go through the metal detector. The new 3-d imaging scanners are safe.

Full contact sports are a bad idea, anything like karate that would risk a direct hard hit to the device. It won't hurt the pm, but it will bruise us. There is a company that makes protective shirts for kids to wear if you're concerned. There's no reason to think she won't be just like any other healthy active child. This is a lot harder on the parents than the kids.

When we have CCHB, our hearts are usually structurally perfectly normal, we just have an eletrical short circuit. It's the easiest problem to fix, the pm simply wires around the broken circuit and gives us a normal heart beat. It can be hard to swallow and a big adjustment for you, but it's a fairly simple problem with an easy fix. I've always been grateful that I had a problem that *could* be fixed and I get on with my life. Good luck to you! I'm glad you found us. I hope some of the other kids will pop in. We've had quite a few parents with babies with pm's come but I can't think of any who are regular posters, most of them ask their questions then move on.

 

Welcome to the forum. I'm so sorry you've had to go through this, I can only imagine how scared you've been. Tracey's post is a very good one, and I hope has reassured you somewhat. There are indeed many people on this forum who've had PM since babyhood, and I'm sure they'll comment if they see your post.

I think that doing research on the web, as you are, is a good thing: when I got my PM (at 42) I found the more I learned, the happier I felt. This site is a really good one, and very supportive. The people here will help you with any question you have, as you think of it: don't be afraid to keep asking them. We've all needed answers.

I can't really improve on Tracey's post, but I wanted to post to assure you that we understand your fears. Many people around you will probably have out of date ideas about PMs - like the old worry about microwaves etc, which are quite out of date. There's practically nothing that is a problem, including speakers, TV, wi-fi, iPods, cellphones, and so on.
Is your daughter still under the care of Gt Ormond St? Because if so, I would think they be able to give you more reassurance when you next visit. Don't be afraid to ask questions at her check-ups: write them down beforehand, if it helps (it helps me) to remember them.

Hope you keep posting here. Welcome.

 

hi, before I was born the docs knew I had complete heart block. my pacemaker was fitted at 4 weeks old. so ive had it all my life. Im 32 now and Ive thankfully never had any problems. As an adult I probably worry more about it, but as a child it never bothered me in the slightest. there pretty much is not anything I could not do or told not to do. I just had a new one fitted about a month ago, that will be pacemaker no. 5! just so you know there is no toys or gadgets that I stayed away from as a child or adult and nothing has ever went wrong or interfered with having a normal life. !
hope that helps a little.
regards
elaine.

 

Hi.

I think you have just found a very good support system!!! There are SO many members on here more than willing to help you. I'm sure you have many many questions and please feel free to ask 1,000 if you have to.

I am not a mom (by choice), but there are a few mothers that come on here that have children with pacemakers so keep on popping in and repost your original post if you want. I just wish I could remember their usernames as I would let them know that you are looking for support.

You could use the SEARCH feature - upper right hand corner - that may guide you in finding some helpful information from other mom's.

Perhaps at the hospital where your child had the pacemaker, you could post something on a bulletin board - looking to form a Mothers Support Group????

I wish you all the best.

Just remember - we are here to help.

hugs,
Pookie

 

Hey - you have found the best site there is!!! Here you will get all sorts of help and advice...

I am a mum with a pacemaker and just wanted to send you a hug.

Please do take the above advice! They are fab people and quite wise!!!! I always drop them a message if I need some re-assurance about things! You will make lots of lovely friends here.

Wishing you all the best with your wonderful baby.

Love & Fluffy Hugs, Loopy Lou xxxxxxxxxx

 

Hi, Gracesmum;
It is very amazing! Your story sounds just like mine and my daughter's; she is now 5 years old. The only differences are that she had the surgery at the Children's hospital in Louisville, KY, and she did not have an infection.
You should not feel guilty although I felt the same way at the time. My daughter is active and at different times in a year she is doing ballet, swimming, ice skating, gymnastics and now we are considering soccer. At gymnastics, she knows (and her teacher knows) not to support herself on her tummy against the bar but other than that she can do everything.
Here are a few things I keep an eye for:
1) When she was sitting in a stroller, I was fastening the straps a bit looser since the thin strap was too tight to her pacemaker area. The pm is on the left side of tummy area.
2) On the other hand, in the car seat, I use the straps as tight as they are supposed to be.
3) When brushing her teeth, I remind her not to push her tummy against the sharp edge of the sink.
4) At school, she knows (and her teacher knows) not to support herself on the monkey bars.
5) Not going through an airport metal detector, no matter how much the security peopple insist.
All the above is good news, ha? Well, here is some not so good: she is now on her 3rd pacemaker!!! She got the 1st one (St. Jude pm and Medronic leads) 3 days after birth; her 2nd one (St. Jude pm and Medtronic leads) at 18 months and her 3rd one (Medronic pm & leads) at 3 years old. The reason for so many surgeries it was the leads got broken or damaged. There was no problem with any of the pacemakers but they were implanting a new pm each time since they had her open because the new one would be bigger and could do more diagnostics and had more battery power than the previous one. Even the cardiologist was puzzled why so many frequent problems had occurred and he assured us that it is very uncommon to have so many problems; but we did. Before the age 3 she did not do any gymnastics or any other organized activity and I was with her all the time so she never had an accident that could have lead to such damage.
Anyway, I thought of letting you know even though it is such a rare incident. In spite of the three surgeries she has been through and our concerns, she has managed to bring from the moment she was born joy and happiness to all of us. It is amazing how fast we forget those bad moments! It is true!
Best of luck to and your baby!
Ada

 

My granddaughter was diagnosed in 26th week utero - had a HR of 55 when born, paced on day 3, heart failure episode on day 5 - put on meds - no further deterioration since then. She is active (too active), runs circles around us and loves life. She is afraid of doctors if they give shots, but loves her cardiologist and treats him like a pal.

When under a year the doctor told Ruth to limit her tummy time - to not let her play with cell phones (just in case) and not to let other kids "roughhouse" with her - other than that just let her be a baby. The PM doctor told her that most leads break in children when they are under 2 so after that you can breathe a little easier.

The nervousness and guilt you feel come with the package but will lessen as time goes on. You did nothing to cause this - but how you view it can help or hurt you and her. If you have a strong faith in God and believe that he will never give you what you cannot handle that will help steady you - and it is true, He won't.

You may see as she gets older a real resentment of doctors when the pacemakers have to be replaced. Just let her talk about it - get it out. But don't let her be a brat - that will hurt her worse than her heartblock ever would.

Aletheia is 6 now, in kindergarten, very well liked and quite the flirt. She takes meds that make her have to go to the restroom a lot and sometimes the kids tease her about "going potty" so often. I was there one day when they said something and she just looked at them and said, "it's the meds, silly, that make my have to go, don't you know". That seemed to satisfy everyone. Please enjoy your child - and be grateful that she was born when so much can be done.

 

The part about being worried about losing her - my daughter still struggles a little with that - it's the shock that comes with having a child with a physical ailment that will never completely go away. But, unless your doctors are very worried - try not to give way to those fears - she will probably have a very good life.
Magnets - like the ones you put on the fridge never caused a problem. We were told to be careful of cell phones, but she grabbed at some anyway and nothing ever happened. If you went into a stadium where there were large sound equipment systems we were told that might be a problem. Your PM checkers/doctors should be able to answer all those questions for you.
Remember, she just knows whether or not you love and enjoy her.
We were told that Aletheia was probably going to need a transplant within 6 months of birth - but later a very good team analyzed her and said that meds and the pacer should do the job - and it has. At this point the cardiologist said no one would even consider her for a transplant - try to be hopeful and take one really sweet day at a time.

 

I was a little bit older but still fairly young when I got my 1st PM. My parents never restricted me with anything. They treated me like a normal child. The only thing my cardiologist told me that I couldn't do was play basketball because I really wanted to play. I had my first 3 PM's in my right abdomen area. I took a course in HS that had me doing something that I felt like it might hurt the PM and the teacher had me do it vice versa so I could do it. Some of the other students thought it was strange that I was doing it backwards but it wasn't too bad. I don't think about the PM all the time. I am on my 4th one and it has been 5 1/2 years since this one was put in. I had no problems with any of them not even the leads. My original leads from 1984 are still attached to my heart. But moved my PM site to upper left area the last time. My parents still worry about their little girl at times even though I am 34 and married. That is what they do.

 

New Mum,

Hi, I have a little one going to be 3yrs old soon and she had a pacemaker put in just before her 1st Birthday. I completely understand what it is that you are going through. What I did was read through the entire manual for the Pacemaker that she was provided. as the other poster's have noted really not a whole lot to worry about, I really just make sure that she keeps away from most magnets, especially the magnet toys that are out like Knexs. She does not seem to act as if anything has every been wrong with her, I try not to be so MOther hen with her when she is playing. I generally try to let her play like any other kid, they are going to fall and get hurt but I do keep a VERY close eye on her when other kids are around as they do not know how to be careful and sometimes things can happen, so I try to just make sure that no other child is going to push her in that area, or kick or something of that sort.

I even have her in a Toddler Gymnastics class right now and the only thing she cannot do is the gymnastic bars where you would roll over it on your stomach as her PM is in that region at the moment till it gets moved to a more perm. spot. Good luck to you and yours, and as another person posted, try to post something at hospital or the Cardiologist office to get your own group going which I am also in process of doing now.

Wanda

 

I actually joined this club so that I could respond to your post. I completely understand that you would be worried. My grandmother, my father, my sister, and myself, all have pacemakers. You can imagine how much of a nervous wreck my mom is when coincidentally my sister, my dad, and I need to get pacers replaced within two years of each other. My sister and I were both sick little babies. My sister was a 1 on the APGAR scale. The outcomes for my sister and I looked very poor. My sister is now 26 and has finished her last year of medical school. I am now 24 and very healthy, happy, and strong, and thinking of having my own child after my next surgery. I actually do more physical stuff than most people my age. For example I rock climb and I also cut, split, and stack the fire wood that we use to heat our house.

My point is, that doctors can predict many things, and are usually right. However, there are some kids who for some reason get through all of the really rough stuff and turn out ok.

My advice would be to let her play and do most of the stuff that a "normal" kid would do. It may be tempting, but you don't want to coddle her too much or she will think that she is less resilient than she really is. When I was little I spent almost all of my time outside playing rough with my neighbors and I turned out fine. I had magnetic toys. I just wasn't supposed to put them directly over my pacemaker. I am not sure if they still do this, but I remember that when I would do pacer checks over the phone, part of the procedure was to put a very large, round magnet directly over the pacemaker. I always thought the feeling was cool, and that it made my heart beat faster through my skin.

It might seem like my attitude about having a pacemaker is pretty cavalier. However, I had parents that did not show how freaked out they were if they ever were that worried. If you are very worried and she sees that, she will start to worry about it as she gets older. My advice, as someone who grew up in a family where the one without the pacemaker (my mom) was the weird one, is to try to relax about it. Find a good doctor that will take the time to sit down and answer your questions. You are a worried parent and you deserve that.