Temporary Pacemaker - Tear to Atrium Wall

[Baby Nicholas]

Our 20 month old son had open-heart surgery to correct a small-moderate sized VSD.  The hole was stitched closed and the surgery itself uneventful.  My husband and I listened to his heart in the CICU that same evening and his murmur was gone.  We were so relieved he was doing well and the surgery corrected his VSD.  The next morning, he was up, talking, drinking juice, watching tv and I was asked to step out of the room so that the temporary pacemaker leads could be extracted.  I was informed that he was being given some morphine to take the edge off the extraction - that the procedure should take about 5 minutes and they would call me back in when they were finished.  My husband was on his way back to the hospital - I had stayed with him that entire evening.  While the procedure was being done, he went into cardiac arrest.  I was pulled aside from the waiting room and told my son was fighting for his life.  He was losing a lot of blood, was reopened.  They had no idea how long he was without oxygen.  By the time my husband got there, he was "stabilized" but we could not see him yet.  In the interim, he went into cardiac arrest again, lost more blood, more trauma to brain.  He was on ECMO for five days.  He regained great physical recovery but the brain damage was permanent.  We pulled life support.  Are tears to the atrium wall that lead to these types of deaths uncommon or is it a risk that patients should really be made aware of before these types of extractions are performed?  Can someone explain risk?

[Cleveland Clinic]

Mom and Dad,

I am terribly sorry to hear of your loss. I have no experience with pacemaker leads in small children so I can't honestly answer your questions.  Truthfully, this sounds like a rare complication that no one could have predicted.  

One of the hardest things in medicine is watching families have to deal with unexpected tragedies such as this.  This is miniscule compared to the pain a parent must suffer with the loss of a child.  Try to remember  you are not alone and there are multiple places to look for for support and strength --  from your husband, family, friends, and faith.

Again, our thoughts are with you.

[macdoo]

I'm not a doctor but after reading your story i just wanted to offer my commiserations for your loss.

Very sad story.

[hankstar]

I can read about PVC/PACs , cardiomyopathy and the list goes on, but these stories leave an emptiness inside me I can't describe only that reading such stories and tragedies just breaks my heart.

You have my sincere condolences and deepest sympathy for the lost of your son.

Having said that maybe the leads could have been left in place longer and should have been done by very skilled hands in an O.R. setting and not in an I.C.U., but who am I to second guess.

Once again my sincere condolences for your lost, may God give you the strength to go on and get the questions you have to get answered.

Sincerely,

    hank.

[Kristin391]

I am very sorry to hear of your loss.  I can tell you from personal experience.  I had a pacemaker with a wire in the atrium and a wire in the ventricle.  Because of heart failure, they wanted to upgrade the pacemaker to a biventricular pacemaker and ICD which would have three wires.  I have had many neck surgeries so the surgeon did not think it would be wise to leave in to old wires and add three new ones so I had to have the old ones removed.  I was prepped for open heart surgery in the event the wire extractions would be a problem.  However, my wires were in for a long time and had scar tissue.  With your child, I would suspect it was in a very short time and should have come out quite easily.  This is so very unfortunate.  Did they do an autopsy to see what happened?

[Kristin391]

I forgot to say that my wires were removed in the operating room where everything was ready for open heart surgery.  In the end my wires came out very easily and thank God, they didn't need to open again.

[mmfd]

I am so sorry to hear your story.   For what it's worth, I used to work in a pediatric cardiac surgical ICU a long time ago.  Taking out the pacer wires was a routine thing for us.  The longer you leave them in the harder it is to get them out safely.  So it sounds to me that they did the right thing and that a one-in-a-million adverse effct happened.  We did encounter 2 cases that I remember when the left atrial line was removed.  This is different than the pacer.  It was a line to directly read the pressures in the heart to better gauge fluid treatment.  A slight risk of hemorrhage was possible and I did see it happen twice.  One patient survived and the other didn't.  Both children were very high risk patients.

[Baby Nicholas]

Thank you all for your condolences.  I am sure you can only imagine what me, my husband and family are going through at this time.  What happened to our son is an unspeakable tragedy.  To mmfd who worked in pediatric cardiology, thank you for your comment.  You could probably ascertain that our son was not a high-risk patient.  He was very healthy.  The VSD was causing some leakage and the cardiologists were afraid of damage to the aortic valve.  The surgery was recommended to prevent that.  Perhaps it was one of those things but there are still so many unanswered questions:  why no oxygen for so long - why not use ECMO sooner if brain damage was a concern - we really need to pursue from a medical standpoint why his case was fatal when he was so healthy.  I am sure it will take us years of questions to put have it make any kind of sense to us.  Not one person that was in that CICU room came up to us and spoke to us about his demise.  And no parent will accept unanswered questions until they are somewhat addressed.  We have a long road ahead of us...

[mmfd]

It IS terrible that no one came to you aferwards to explain what happened.  That is inexcusable.  I might get all the records, and I mean ALL, and have them looked over by someone who knows what they are looking at.  You do indeed deserve many answers to your very appropriate questions.

[Baby Nicholas]

Yes, you are right.  We are obtaining the records.  People did try to explain, doctors, nurses, etc., however, not anyone who was physically there working on him while it was all going on.  We will try our best to get the answers we need to get from where we can get them.  I posted to this forum to see what other peoples' experiences have been.  Again, thanks.

[pms_barbie]

I am very sorry for your loss.  I hope and pray you find the answers you are seeking.  May God bless you and give you some peace of mind.

[NBCT]

My heart goes out to you and your husband. I said a prayer for your angel above and to give you the strength to seek the answers you need.

[uptowngirl]

Hi.  I am touched by your courage to share the story about your son.  You are also in my thoughts and prayers.  We also lost a little baby girl (at 5 1/2 months old) many years ago.  It's difficult, but I am glad you are sharing and pursuing answers to the situation.  

Do you have other children?  I was just curious to know. We have a son and 2 daughters.  Thanks

Uptowngirl

[Momto3]

Please accept my sincerest condolences on the loss of your precious son.  

A Forum Friend
Connie

[Baby Nicholas]

Thank you to all for your thoughts.  To answer Uptowngirl's question, yes, I have a daughter and son from a previous marriage and our little guy that is gone has a brother.  My husband and three surviving children are what keep me going now.  I am sorry to hear that you lost a little baby girl - I'm sure it is a pain you carry with you your entire life as I will mine.  I can only hope to understand the pacemaker procedure that took my son's life to better put his passing in perspective.

[uptowngirl]

Hi.  Thanks for your response. I'm glad to hear that your husband and children keep you going.  That's what kept me going also. The first 6-12 months was rough after losing our little baby "Annie" but after about a year things progressively got better.Though the memory of Annie is strong, the pain has faded substantually.  
Again, know that were all pullin for you.
Sincerely
Uptown

[pandora9048]

Please accept my deepest condolences on the loss of your precious little one.
I hate to be the one to bring this up, as all surgeries, even minor ones, can have complications, but I would consult a legal professional to explore all your options.
Sincerely,
Jennifer

[Baby Nicholas]

Agreed, complications do occur.  And as for your other point, we agree as well.  Unfortunately it can come to that.  Thanks.