3 year old - congenital heart block

• by StrawberryBoat
• 2023-09-27 16:51:35
• General Posting
• 274 views
• 1 comments

Hi all!! 

First post for me- and first off I am delighted to have found this site and have read all posts I could find regarding complete heart block. Before I ask my questions I will recount some of my son's story- and mine, to give reassurance to anyone that may be frantically googling for information after being given this diagnosis of their unborn child during pregnancy.  (Jump to last paragraph for the questions)

That is what happened to us- CHB was found during the 21 week scan. Unlike some of the posters here, I was always told that 99% of the kids that have totally structurally amd anatomically normal hearts like his but have a complete heart block, will be totally fine during pregnancy and after, do not have less life expectancy or any other developmental issues related to this. Treatment is a pacemaker, eventually. My boy was always between 50 and 60bpm, in the womb as well as after. They were indeed prepared for an immediate PM procedure after the cesarean as they said when the baby's circuit needs to do all the work by himself after the umbilical cord is cut, sometimes it needs immediate help. His heart didn't and we went home 3 days after birth. Totally happy and normal boy now (3.5years old). The question of WHEN the pm will be inserted of course lingers. I was told that roughly 50% of kids with this condition need pacing before and 50% after teenage years (so adulthood sometime- can be 20, 30 etc).

Now: what I have not read yet in the posts here (surely haven't read all by far!!): often the pregnant Mums have an underlying, (so far) asymptomatic autoimmune disease. The antibodies are anti Rho and anti LA. I have them- both now. Still nothing symptom wise.  Will lead to Sjogrens eventually- apparently not the most awful prospect- dry eyes etc.but important to have a rheumatology clinic monitoring to help w symptoms once they arrive (50s/60s). So Mum's! I know you are worried sick about your lil one, but do get yourself checked out sometime.

Finally!! questions: his time for a pm has come! Because he is small (3.5 years old) the leads will be placed externally on the heart (if that makes sense)- any tips on the recovery period? How many stitches? any tips on how to prevent a toddler from raising his elbows above shoulder levels etc for 6 weeks. I shudder. Any tips on how to recognise issues w the pm in such a young kid - his language is a bit behind, so don't be fooled by the age. How ill I recognize lead displacement? Is this common? How long shld batteries last for this condition?

Thanks for reading all this. I hope I will update in a few months with a set of tips for future patients facing the same.