Baby diagnosed with Heart Block

Hi all,

our baby has been diagnosed with a 2-to-1 block and we have subsequently been informed it was caused by Anti-RO antibodies that my Mom has. The baby is currently at 30 weeks and is doing fine - we are expecting delivery at 35 weeks if all goes well. We realise we have a real journey ahead of us, but great to stumble across a group that has been through this.

Steve

4 Comments

Welcome to the Club

by Pacemum - 2014-07-15 03:07:48

My daughter has had a pacemaker since being a few months old. Your are fortunate that your baby has already been diagnosed. Hope that everything goes well for you and your baby.

AngrySparrow

Interesting comment which I have not seen before. I am a Rh-negative mum with Rh-positive child who has heart block.

welcome

by Tracey_E - 2014-07-15 05:07:47

So glad you found us! There are other parents of babies and young children who are paced here for you to talk to. You'll learn that while it sounds scary, it's a problem that has a fix and those of us with congenital block thrive. Yes, you have a journey ahead of you, but your baby has a bright future.

I'm 47 and have congenital complete block (that means no signal gets through, your baby has the half the signal getting through). When I was born ('66), they didn't have ultrasound so my parents had no clue until the pediatrician noticed something was off when I was 5 and I got by without being paced until I was 27. I'm healthy and active, have two children, run a business. There's nothing I want to do that I cannot. No one would look at me and see a heart patient!

Prayers for an easy delivery and smooth road ahead. Please don't by shy if you have questions or just want to chat.

HBK

by slarnerd - 2014-07-16 03:07:34

Hi again Steve. I am glad that you found me and Heart Block Kids support group. Your baby has an excellent chance at thriving and leading a relatively normal life.

If other expectant parents stumble upon this post (or parents with paced kids), please join HBK. We have more than 300 families who have a child with HB and/or pacemaker.
https://groups.yahoo.com/neo/groups/heartblockkids/info

AngrySparrow, Steve's baby and mine developed heart block as a result of SSA/SSB autoantibodies (also called Anti-Ro, Anti-La) associated with Sjogrens Syndrome and Lupus (though many affected moms are asymptomatic), it's not RH factor - the only similarity, as with all auto/antibodies, is that it crosses the placenta and can harm the baby. http://neonatallupus.com/

Sterling

Infant Pacemaker

by angelaudrey09 - 2014-08-19 02:08:34

Hi Steve, I have a similar story. My third child had a 2/1 heartblock that was discovered when I was 25 weeks pregnant. My Anti-Ro antibodies were attacking her heart in utero. Turns out I have Sjogren's Syndrome which I did not know about (and had never heard of until this situation). My little fighter managed to stay in utero until 37 weeks where she was delivered c-section. She had her pacemaker implanted when she was 8 months old and now she is a thriving 5 1/2 year old. So keep the hope alive! I will pray for your family that everything turns out well.

I am so glad to have found this group! I have yet to meet any other families in our situation where the mother has Sjogren's and the baby has a pacemaker. I would LOVE to hear from other people in the same situation. Thanks!

You know you're wired when...

You trust technology more than your heart.

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My pacemaker is intact and working great.