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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    A huge thank you to Taylor for highlighting our leg pain in CHD study, here's the link for anyone who missed it 👇www.lhm.org.uk/wp-content/uploads/2019/08/CTY18-009PRF.pdfTaylor is a medical student with a single ventricle heart condition, you can follow her amazing journey by clicking the link below 👇Fontan with a Future - A Medical Student's CHD Journey#halfaheartnothalfalife#tuesdaymotivationRaise your hand if you’re a Fontan patient and experience leg pain!All my life I have had occasional aches in my legs, especially after a day of strenuous activity. I thought it was just “growing pains” but I continued to experience this after I stopped growing.Interestingly, a recent study found that this phenomenon is common in Fontan patients. In fact, 94% of patients with Fontan circulation reported leg pain compared to 30% of their healthy siblings. While this study only looked at 220 patients, I think the findings are striking. The authors don’t know exactly what causes this pain but proposed some ideas like decreased oxygenation levels, lower vitamin D or decreased bone density.Fortunately, this pain can be easily treated with over-the-counter pain medicine, heat, or massage. While it is uncomfortable, there is no reason to believe it is harmful or dangerous. Still, it would be interesting to get to the bottom of this and help those who suffer from pain frequently.Would love to hear from others if you have had similar experiences!If you’re interested to read more you can check out the article: www.lhm.org.uk/wp-content/uploads/2019/08/CTY18-009PRF.pdfLeg Pains in CHD: a distressing symptom of a wider problem, Hutchinson et al.#heartwarrior #medicalstudent #wellness #research ... See MoreSee Less

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    "We will never forget hearing the words "he might not survive.""But Loki showed us he was a true fighter.""Sometimes I feel people forget how serious his condition is, because "he is doing well" yes and showing everyone he is battling on, with the biggest smile, the cheekiness and his little ways but yet just one little thing could mean he could end up back in hospital".Shared by LHM member Emma, heart-mum to Loki here who was born with HLHS. Thank you. ... See MoreSee Less

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