Update on my son born with Neonatal Lupus and complete heart block | Lupus Forums at The Lupus Site
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Update on my son born with Neonatal Lupus and complete heart block

Discussion in 'Living with lupus' started by gingertoni, Nov 17, 2011.

  1. gingertoni

    gingertoni Registered

    Hi My son has had a new pacemaker fitted and all went well:), it is his third since he was born, he is 8 in 2 weeks time :) The first when he was less than a week and the second at 4 months.

    As his condition is so rare I wanted to share a positive that he is doing so well, everyone forgets he has it most of the time 8)

    Thanks for listening. :)
  2. ElephantEyes

    ElephantEyes Registered

    Hi Toni - that's great news! Thanks for the update :)
  3. michelledub

    michelledub Registered

    That' great.
    Hope his Mum is doing as well as her little boy

  4. keebler

    keebler Moderator

    Hi Toni,

    That is great news. :)
    Thank you for letting us know how he is going.
    You give others hope.
  5. Southshoremom

    Southshoremom Registered

    Hi Toni. My daughter who is 13 was born with complete heart block. Hank you for sharing the good news. What beautiful children you have! Your son is so cute! My daughter has had four surgeries. Her last one being the most successful but also the most nerve wracking!!!! She plays basketball soccer softball and cheerleads! I think what she has been through makes her who she is today - one strong beautiful girl! Please private message me. I would love to share stories. In always felt and still feel guilty because my antibodies caused her condition. When she was recovering during this last surgery I thought she was asleep and untold her I was so sorry. She opened her eyes and squeezed my hand. She told me please Mom,,,, I wouldn't be here if it wasn't for you. Thank "you" Mom!!! From the mouths of babes. Right!!
  6. pennylp

    pennylp Registered

    Hi Toni,

    That is great news... You must be very strong and it must be very hard for you... my prayers will be with your family....

    Love Penny
  7. macfamily53

    macfamily53 Registered

    Hi Toni

    I am so happy for you and your son.Thats got be make you feel a little less stressed for sure. I hope and pray it continues for him.Please keep us posted on how he is doing?

  8. gingertoni

    gingertoni Registered

    He is doing really well now, everything back to 'normal' and hopefully wont have to think about the next pacemaker now for another 8 years :)
  9. dmarie

    dmarie Registered

    Wow! Thanks for the update.

    Take care.

  10. countrylass

    countrylass Registered

    Thats great news Gingertoni........
    saw programme today featured a mom who had lupus giving birth.and what checks they do...lovely see your child doing well.......


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