Heart block

Does anyone else have a child with heart block? Connie is 4 and was diagnosed at 21 weeks into pregnancy but an ECG when she was born was clear. She has recently been diagnosed again with first degree and second degree types 1 and 2 AV node heart block. She seems to be sleeping more and more each week. Out first cardiology appointment is 6 march and I was wondering if anyone had any advice for us I'm so worried about it all and to top it off flaring myself :0(

4 Replies

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  • Hi

    Both my children were born with complete heart block. My son was fitted with a pacemaker at 6 weeks, my daughter at 24hours.

    Her sleeping more could be a sign she needs some help. Where are you being seen? I have a lot of experience with this and heart conditions in general as unfortunately my daughter developed another heart condition and in hospital for an extremely long time. There's nt much I haven't seen! Please message me if you would like to talk or would like any advice, ill help where I can.

    My advice would be to get her seen as soon as possible. Does she have any other symptoms? Grey colour, blue lips, off food, rapid breathing?

    xxxxxxx

  • Hi

    Both my children were born with complete heart block. My son was fitted with a pacemaker at 6 weeks, my daughter at 24hours.

    Her sleeping more could be a sign she needs some help. Where are you being seen? I have a lot of experience with this and heart conditions in general as unfortunately my daughter developed another heart condition and in hospital for an extremely long time. There's nt much I haven't seen! Please message me if you would like to talk or would like any advice, ill help where I can.

    My advice would be to get her seen as soon as possible. Does she have any other symptoms? Grey colour, blue lips, off food, rapid breathing?

    xxxxxxx

  • My daughter was born with a complete heart block 35 years ago, I didn't have her fitted with a pacemaker at all she had a normal childhood with the exception of not being able to do sports as her heart didn't speed up but stayed a constant 36 beats.

    She slept a lot as a baby, and took milk often in small amounts but grew well. She has a boy of her own now and went through pregnancy without a pacemaker but had a temporary one fitted during labour. she made the decision to have a pacemaker fitted when her son was a toddler so that she could cope better with running around after him. He is 16 this year.

    There are pros and cons to every situation, my daughter had problems with her 2nd pacemaker replacement which became infected and nearly lost her life then. You know your own child better than anyone, take advice listen to it, weigh it up then do what you think is best for your daughter.

    My daughter still has blue fingers toes and chin and always feels cold and that is with a pacemaker everyone is different and the health profession is there to advise you.

  • Thank you got your responses. She does complain of pains in arms and legs and tires quickly. Is it likely that she could have lupus too?

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