Worried mother-2year old son to receive pm

Hi everyone! So releaved to have found this wonderful support group. I'm a mother of 2 children,a daughter turning 8 in June,and my son turning 3 in May. My 1st son was born in 2004 but died on the 4th day after birth,due to a very rare heart defect. To make a long story short,it seems the genes in our families males are bad news!! My husbands grandfather died when 35,had a slow heart rate,and on 35 it stopped! While still pregnant with my son Jayden,who's turning 3 in May,my dr picked up an irregular heart beat on the sonar,and with my 1st born's history,they monitored him well till after birth. A few days after he was born,we took him for a heart sonar where they did NOT pick up any low heart rate,just the extra pulse which made it irregular,but said that its clear his heart is developed perfectly,and beating strong. Untill the beginning of this year,we were happy and worry-free! Our second son is healthy...!! He is strong,wild,busy,everything you would expect from a boy his age!! But in Jan 2013 he started complaining about a pain in his chest. A few weeks later I realized his heart rate felt low,and it was confirmed! While busy - between 70 and 90 bpm,and while he sleeps, as low as 38bmp. After a few dr's visits,and a trip to the ped card's,they picked up a "block". My son is healthy,happy,no signs of heart problems at all from the outside!! But as you can imagine,after loosing my 1st son,I AM DEFESTATED !!!!! My heart and soul is breaking as a mommy!! Just the idea of something happening to my boy... Its crazy!! So...because of the history,and the slow heart rate while sleeping,he is booked for a PM on the 28th of Feb,and i am a wreck!! As I understand,it will give us peace of mind,knowing his heart is beating safely. Which is a good thing,right? But on the other hand,I fear the operation,and any negative impact the pm can have on his future! I am after all a mommy,and when I see my little boy,riding his bike,swimming,running and jumping,it just seem so unfair..! Taking a strong healthy boy to a hospital, and leaving with a wired boy! Sorry if I might sound negative,but I'm sending this message with the hope that a few of you might reply to it,giving your thoughts or/and opinions to my feelings. I would really appreciate any comment,and I hope that someone with the relevant experience can offer me some advice,or perhaps help me feel more positive about it. I DO realize that its a chance to safe my little boy's life,but I have also been praying very hard for the last 3 weeks,that medical interference would not be necessary! YES,I did and still do wait for that miracle to happen,just so I do not have to put him through this! But if it does not happen before within the next 2 weeks,he will be receiving a pm. Any advice,feelings or thoughts will be much appreciated!!! Hope to hear from someone soon!! Thank you,if you took the time to read this!! Annelise (Jayden's mom)

9 Comments

reply to Tracey

by Annelise - 2013-02-17 03:02:16

Thank you Tracey! Much appreciated!! I will indeed keep you updated on how things are going with him! I'm going to do everything in my power to give him the best future possible!! I'm def gonna search to see if such a fb page still exist. Thank you! Please tell me.... How painfull is this operation? What can I expect for my little boy? And for aprox how long? I know every person is different,and handles pain diff,I would just like to get some idea of what he might go though. Thanks again for all the very helpfull comments so far!!! X

comment to Don

by Annelise - 2013-02-17 04:02:07

Yaeh!!! So happy to have received my first comment! And just as I hoped for,it helped! Thank you very much Don for your insight! Re:my stress,I am trying my best to keep calm infront of my son! I daily mention (to him) the fact that the dr is going to help is heart beat faster,so he can run fast for long,and be even stronger than he already is. Stuff like that... So he can get used to the idea that something is about to happen soon,but it will have posivive effects. How much it is helping,I do not know,but I have to try! I also try not to speak about my worries infront of him. Its true what you say about the pm being a miracle! After loosing one son,for whom we COULD NOT DO ANYTHING,I do realise that at least,this time around,we CAN!! My mind is in overdrive allready,about how to help him be a positive pm carrier! I will look up Abigail for sure! Thank you! Just one thing - the Achillis ??? I'm clueless? Something that I should buy? What is it? I appeciate your comment more than you realise! Any one else's comments and thought as well!! Oh,and one more thing... Will the pm weaken the work of his heart? Thank you VERY much! Annelise

Advice to a Mom - from a Dad

by donr - 2013-02-17 04:02:52

Annelise: You have a right to be concerned. You have a right to ask for ANOTHER miracle.

But, let me suggest a new prayer "God, grant me the strength to change what can be changed; the serenity to accept what cannot be changed; & the wisdom to know one from the other."

The FIRST miracle was the birth of Son #2 & his survival against pretty bad genetic odds. Miracles are NOT rationed, each of us is authorized as many as befall our lot, but second ones are pretty rare.

You are facing a near miracle on 28 Feb, when he gets a PM. Less than 50 yrs ago, they did not exist in a form that could be implanted in a child. Through the miracle of Mankind's genius, they were invented & developed to the point where they are today. Your Son will benefit from someone else's miracle. Stop for a moment & thank your God for THAT miracle.

Be careful that you do not display such stress & anxsiety that you infect your son. Right now, he needs a strong Mom - & Dad for him to survive the procedure with a good mental attitude. Youngsters his age are very sensitive to the subliminal messages that their parents send. I suspect that the PM will be placed in his abdomen - not a lot of space in the upper chest of a 2 yr old. He now faces a modified "Normal" existence. Make sure that you allow him to grow & develop to the maximum w/i his capabilities - which are pretty near normal for most PM children. He will know that he is different - but it is up to you to see that his differences are minimized. That PM he gets is a tough little bugger - probably sturdier than we are. Buy - like Achilles, it has its heel & that must be protected.

Miracles do not come free of charge. You have one - now you must pay by accepting the responsibility of ensuring that Son grows up capable & confident in his abilities to function normally.

There are all sorts of folks in here who have either had the procedure themselves or have children who have.

Look up Abigail Winthrop as a member - she posted a photo of herself sitting in a plastic bath tub w/ a medial line scar from top to bottom (exceeded only by the width of the smile on her face). Followed by a photo of herself leaving for a big Soiree as a senior in high school.

Keep praying for that miracle, but remember that you have already one, w/ the benefit of another that happened to someone else.

Don

Achilles Heel

by donr - 2013-02-17 05:02:29

It is a part of Greek Mythology. Achilles was a Greek hero who was made invincible by the Gods - w/ one exception; his heel was vulnerable & should anything happen to his heel, he would die.

The term "Achillies Heel" has become used to denote any strong person or object that has a small weakness, that if exploited will cause it to fail.

PM should not weaken the heart. All it does is SUPPLEMENT the failed electrical control system of the heart. Muscles are not involved at all, except to respond to the electrical signals.

Don

pm's

by Alma Annie - 2013-02-17 05:02:37

I know you will have lots of support from mums with children who have a pm and it seems from their postings that all goes very well indeed, so no worries there. However, as a mother and grandmother I do feel for you, in fact I shed a tear, not for your son but for you, especially as you have already lost one. As mothers we can get so depressed when our children have something not right with them. (Even adult children!!) It is all right to go and have a good cry; that might make you feel better! I know you will be strong for your son, but it is ok to have a few depressing feelings. Please tell us how you feel as this will make you feel better, getting it off your chest, then you will be able to carry on with more strength.
All the very best
Alma Annie

surgery

by Tracey_E - 2013-02-17 05:02:40

I got by without the pm until I was an adult so his surgery will be different from mine. With kids, they place it in the abdomen. With adults, it goes on the upper chest, under the collarbone. I haven't had an abdominal placement so I can only tell you what I've read but kids bounce back a lot faster than adults. Most of us are sore for a few days, more or less back to normal but moving a bit slower than usual within a week, fully healed and feeling great by 6 weeks. I have no idea how this varies for kids.

Let me tell you a story... I have a friend who is a pediatric critical care nurse. She worked in all sorts of fields but decided she liked picu best. I asked her how she could stand to see seriously ill children all day long, it has to be heartbreaking. She kids have no idea they're seriously ill, they don't know there's anything to worry about, they generally don't complain and have negative attitudes like many adults which is why she believes they heal faster.

healthy

by Tracey_E - 2013-02-17 11:02:29

What you are feeling is perfectly normal!!!!!!!!!!!!!!!!! You have every right to be scared, to mourn.

I was just searching but can't find it, I believe there is a facebook group for parents of kids with heart block. There used to be a yahoo group called heartblockkids, not sure if it's still active or not. Also check at the hospital, see if there is a Little Mended Hearts that you can join.

If your son has to have a heart problem, he has one of the easiest to fix. The heart is structurally healthy and strong, it just has an electrical short circuit. When the atria beats, the ventricles don't always get the message to beat also. All the pm will do is watch, when the ventricles don't beat when they are supposed to, the pm will make a small signal that mimics what the heart should have been doing on its own. This signal causes the ventricles to beat. His heart is still doing all the work.

I was born with the same thing as your son. I am 46 now, have two teenagers of my own, am healthy and active. I look like all the other moms at the gym or who volunteer at school. There's no reason to think your son won't have a bright and perfectly normal future!

Congenital problems are a LOT harder on the parents than the children. I never knew anything different, don't remember before being diagnosed, it's just the way I am. Kids don't think like adults, they aren't worried about the future or mortality. As an adult and parent now, I understand how hard it was on my parents, how much they must have worried, but they never let me see that. They always focused on what I could do, not what I couldn't, so I grew up healthy and secure.

The very best thing you can do for your son is to let him thrive. It will be hard to resist the urge to baby and coddle him sometimes but try to never let him see how worried and scared you are. Encourage him to be active, let him have fun with the other kids, whenever possible don't make him feel different from the other kids.

Our prayers will be with both of you. Please check in and let us know how he is doing.

wow!

by Annelise - 2013-02-18 02:02:17

You guys rock!!! Thank each and every one of you!! You truely are amazing! Don't know how I would have been rattled by now,if it weren't for your support!! Still sad,still worried,(which means I'm a mom) but dealing a bit better now that I've got all of you's!!!! Great to know that when I want to know something,you will help! And soon,I will so be able to help others. Blessings!!

Hi Annelise!

by uvagershwin - 2013-02-24 11:02:02

I'm so glad you've gotten so much positive feedback from our members! Aren't they awesome?

I haven't been on much recently, but when I saw your post, I had to respond. My name is Sydney and I was diagnosed with congenital complete heart block when my mother was 16 weeks pregnant. When I was 15 hours old, I had a temporary pacemaker placed to "see if I would make it through the weekend." It was successful, so at 4 days old, I had my first pacemaker implanted. I have had 2 pacemaker surgeries since and am 18 now! However, the batteries last MUCH longer now than they did when I was your son's age (they used to last 4 years; now I'm going on 9 years with 4 more expected, and I'm 100% dependent!), so hopefully he will not need many surgeries!

Your feelings are COMPLETELY normal!! You have every right to be sad and scared. I just hope that we were able to bring a little comfort and hope to you. Good luck, best wishes, and update us!

Heart Hugs!

Sydney

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