Baby with heart block

[Ladybird_22]

Hi everyone, I'm new here

My daughter was recently diagnosed with heart block. It seems that I could have lupus without knowing it.

Has anyone else had a baby with heart block? I'd love to hear other people's experiences. I'm trying to work out what to expect.

[Oshgosh]

I don’t know anytime about this , but. I’m thinking of you and your daughter cx

[Cjack29]

Hi, yes my daughter was born with heart block. They then checked my bloods and diagnosed me with Sjogrens Syndrome and then a year later I was diagnosed with Lupus also. My daughter had a pacemaker fitted due to her heartblock at 2 days old. She has since had another 2 operations. She is turning 6 in a couple of weeks.

Hope your daughter is doing ok.

I know how hard and confusing this journey can be so feel free to message me about anything.

[LalSD]

hello my daughter is born with heart problems and I have been told because I have lupus, doctors also told me that it lupus effects the babies heart whilst pregnant. My daughter also has lupus now, She is 27… I wish you both quick recovery. With best, xx

[Tash29]

Hi,

I was told when I was 28 weeks pregnant that my baby’s heartbeat was beating slower than mine- i had tests done and I was diagnosed with lupus ( SLE ) which was the cause of Mollie’s heart problem….congenital complete heart block, Mollie had a pacemaker fitted just before her first birthday, she turned 16 in April just gone and has started beauty at college, and got her first part time job, she is thriving, she is due an op to replace her battery soon but she takes it in her stride…. I think ‘heart babies’ have so much strength and they bounce back so fast…. Quicker than us!

Completely understand the journey you are starting to take, it can all be very bewildering and scary, please feel free, anytime to message me… I did feel very alone during my journey and would have loved to have had people to talk to that had been through a similar experience!

Big hugs from me!!

[Barnclown]

glad you posted, am sending you 💞💞💞💞…I love that you have these understanding experienced replies. I’ve been unable to have children (long story) but was born with a heart murmur and diagnosed with lupus as an infant. This was way back in the early 1950s when the science of lupus was much more basic than it is now.

I often think about how all this must’ve worried my poor mother, who had endured 10 years of miscarriages before finally having me. Ma wasn’t ever diagnosed with lupus, but she had autoimmune hypothyroid illness and hypersensitivities that indicated a mast cell activation disorder. She wasn’t able to talk about feelings much, but she did raise me to excercise daily, eat a healthy diet & generally learn how to help myself through life style techniques & complementary therapy, all of which has made a big positive difference in my life - & my consultants + nurses etc agree on this too.

I’m so glad you’re here & have found folk who are relating to your situation. I’ve been here 10+ years almost every day: this wonderful community + membership of Lupus U.K. has helped me & many many others enormously. Hope you’ll keep us posted XOXO Coco

[englishrose67]

i havent but hope your baby will be ok xx

[Allingham60]

My sister was diagnosed with lupus when pregnant, as it was discovered her baby had foetal heart block.As a result, at about 8 months old, her daughter was fitted with a pacemaker and she has had 2 or 3 replacements since. She is now 25 years old, beautiful and talented, and has always been very fit and healthy. As Tash29 said, 'heart ' babies seem to thrive particularly well.

Please try not to worry. The treatment for heart block is very successful.

[svfarmer]

hi ladybird and welcome to the group - I’m sorry I can’t help you on this but just wanted to send my best wishes to you and your daughter x

[Ladybird_22]

Thank you for much for your kind replies. It's a relief to finally find some other people who have been through similar. I might pm some of you who have heart block babies.

[Ladybird_22]

Hi all, I just wanted to share that I have set up a Facebook group for parents of children with heart block, to hopefully share experiences and support each other. The link to join is here: facebook.com/groups/1812843...