Neo natal Lupus

[gingertoni]

Hi has anyone else had any complications of this kind caused by lupus?
My son was born with complete heart block, and now has a pacemaker, I have not yet been diagnosed but have finally been reffered to a hospital who knows what they are talking about instead of local ones.

[Clare.T]

Welcome to the forum gingertoni

I am very sorry that your son had this misfortune. As far as I can think there isn't anybody here whose child has suffered any form of neonatal lupus, which goes to show how rare it is I suppose. In 7 years of online forum activity I have heard of two cases. Also, one has to consider that it's very possible there have been far more but nobody realised what it was.

The anti -Ro antibodies were only identified about 30 years ago and I know there's a lot of research going on into the condition, the causes and what can be done in utero to avoid, correct or minimise the heartblock.
I think there's a register of cases to assist the research efforts by getting as much information collected as they can.

I have not yet read any statistics about how many of the asymptomatic mothers do eventually develop lupus or a similar disease. But I hope you will be able to access informed care for yourself, as clearly it is a distinct possibility.

Sorry not to be much direct help. Maybe one of our silent members or even a guest will see your post and get in touch with you. It is important to have contacts with people with similar problems.

Bye for now and the best of luck

Clare

[gingertoni]

Thanks, I was told it was very rare and nearly always in boys but found some american research on the net which showed siblings (even girls had quite a high chance of getting the same problem).
Luckily our second child (a girl) was born with no problems although the lupus factor is still there for here when she is older.

Both my brothers have recently discovered they both have mild forms of heart block, which has not affected them majorly in their lives as they are both now in there 30's, thankfullly.
My mother was diagnosed with lupus about 14 years ago, but unfortuantely didn't make the connection with my very bad symptons when I was carrying my son, neither did any doctors, although there were so many signs there.
Even the scan a few days before he was born, by c-section missed his heart problems.

Meaning I had the bomb shell of lupus being dropped on me on top of a baby with major complications.
All does give a very strong family possibilty of further problems for my children, which is my biggest worry.
Comparing notes with others in a similar situation would be really helpful, and I would really like to give support to anyone who may go through waht we did.

[nonscents2]

Hi Gingertoni

I'm so sorry to hear about your son. That must be so hard for you.

My daugher was born 20 years ago with neonatal lupus. She had very bad burn-like rashes on her face and still has the scars but luckily no lupus symptoms so far.

At that time the research doctors at Sick Kids Hospital in Toronto told me that boys are affected far worse than girls (it usually hits their hearts) while it doesn't in girls. Now that was 20 years ago and I understand a lot is done in utero now so boys have a better chance.

Good luck to you and your son.

Margie

[gingertoni]

Hi
that does make sense and that was sort of what I was told, but I did find research that showed just as many girls as boys got heart block.
Didn't give me much peace of mind when I was carrying my daughter though.
She was however born ok, but my health during the pregnancy was also alot better than when I was carrying my son as well.