Below are ideas of questions you may like to ask at your next hospital appointment.

Contents

About the diagnosis

  • I don’t really understand what is wrong with the baby?
  • Why has the baby got something wrong with its heart?
  • Did we cause the baby’s problem?
  • What further tests will we need?
  • What treatments are available to help the baby?
  • Who can help me understand the condition?

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Treatment choices

  • Am I allowed to terminate this late in pregnancy?
  • What will termination mean for me?
  • If I terminate the pregnancy can I have other children?
  • What happens to the baby if we don’t want surgery?
  • Who will help us if we take the baby home?
  • If we have surgery who will do it?
  • Will we have to travel to receive treatment?
  • What are the risks of surgery?
  • How long will our baby live?

What will happen in the future?


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The plan for the baby

  • What will happen to the baby after it’s born?
  • Who will be looking after the baby?
  • Can we be with the baby?
  • Will we be told what is happening with the baby?
  • If the baby has to travel can we go with them?
  • How will the baby’s condition be kept stable before surgery?
  • Will I be able to breastfeed the baby?
  • Can the baby have a heart transplant?

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The future

  • Can I have more children?
  • What are the risks of having another child with the same problem?
  • How will the baby be after surgery?
  • What sort of life do children with this condition have?
  • Do children spend their lives in a wheelchair?

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Delivering the baby

  • Will I need a Caesarean section? Will I be induced?
  • Can my partner be with me when I have the baby?
  • Where will I have the baby?
  • Will I see the baby after it’s born?

 

 

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    Living every day being different from your peers is frustrating.
    So it is time to reward young people striving to manage the challenges that having half a heart creates. Little Hearts Matter has created a series of awards for 8 – 18 year olds that aim to encourage young people living with half their heart to learn more about their condition and how to manage the challenges they face every day. For more information about the Brave Heart Awards and nomination forms, please follow the link
    www.lhm.org.uk/zipper-zone/lhm-brave-heart-awards/
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