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Extra Materials

Resources & further reading

For families walking the road of a congenital heart condition like Rafael's, and anyone the book has pointed here. The organizations and links below are placeholders. Real ones go in over time.

About HLHS

Rafael was born with hypoplastic left heart syndrome (HLHS), a congenital condition in which the left side of the heart is severely underdeveloped, and which is treated through a series of staged heart surgeries. In the book, Ieva shares a fuller, parent-to-parent account of what the diagnosis and hospital life were really like.

A note: This is a personal companion site, not a medical resource. Nothing here is medical advice. For anything clinical, please speak with a qualified professional or your care team.

Support organizations

Organizations that support families living with congenital heart conditions.

  • [PLACEHOLDER: organization name]

    [PLACEHOLDER: one line on who they help and how. Add the real organization. Do not invent one.]

  • [PLACEHOLDER: organization name]

    [PLACEHOLDER: one line describing this organization.]

  • [PLACEHOLDER: organization name]

    [PLACEHOLDER: one line describing this organization.]

Further reading

Books, articles, and stories the family found meaningful.

  • [PLACEHOLDER: title]

    [PLACEHOLDER: author and a sentence on why it's here.]

  • [PLACEHOLDER: title]

    [PLACEHOLDER: author and a short note.]

Downloads

Printable and shareable extras that go with the book.

  • [PLACEHOLDER: e.g. reading-group discussion guide (PDF)]

    [PLACEHOLDER: short description. Put the file in /public and link it here.]