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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    Colin, Grandparent to Thomas who is 15 and was born with Hypoplastic Left Heart Syndrome, talks about when he learnt that his unborn grandson had only half a heart.

    “Imagine the anguish of excited grandparents who are eagerly awaiting the results of their daughter's 20 week scan only to find that their unborn grandson has a major heart condition.”

    "Being referred to Little Hearts Matter seemed an empty consolation, yet this wonderful charity has provided support, encouragement and, probably most important, hope both before birth and in the 15 years subsequently."

    Alongside his wife Christine, Colin has raised over £8,600 for Little Hearts Matter this year alone, providing us with vital resources that we need to support our families and make them feel less frightened and isolated throughout their half-a-heart journey. Thank you so much for everything you have both done for us.

    We hope you can take some inspiration from Colin's passion and generosity this Christmas, follow in his footsteps and purchase a patch on our Visufund blanket.

    Click here to donate: www.visufund.co.uk/lhm-wrap-a-blanket

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    A massive thank you to the amazing Rowan who was the narrator in our Christmas video!

    Rowan is a big brother to Bobby who has half a heart and he kindly stepped in to help us tell the story of so many half a heart families. We think he did a fantastic job!

    If you haven't done so, please go to visufund.co.uk/lhm-wrap-a-blanket to buy a patch and wrap a blanket of support around more families like Rowan's.

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