There are many stories of children born with HLHS published on the internet. FamilyLink is a collection of these web pages, most of which show a personal view of Hypoplastic Left Heart Syndrome and similar complex congenital heart disease. While it is important to have an understanding of the medical aspects of these conditions, it can also be helpful to see how others have coped with all the ups and downs of having a child born with life-threatening heart condition.
It is reassuring to see more and more children are surviving due to the advances in medical science and the dedication of the health professionals that care for them. At the same time, Congenital Heart Disease is still a leading cause of death of newborns and some of these stories have sad endings. It is important to include these as well so that parents who suddenly find themselves confronted with caring for a child with a serious heart condition find a balanced view on what the outcomes may be for their own child.
We hope these stories can be an inspiration as they really are a testament to the courage of families that have to face the reality of living with a child with a complex heart disease.
- Nathan Smith (HLV), Hearts of Hope
- 20 October 1993, WA Australia
- Caleb Shawver, Brett's Special Heart Friends
- October 1993
- Evan Greco, Brett's Special Heart Friends
- November 1994
- Sarah, Hearts of Hope
- 8 March 1998, Australia
- Jayden Barry Alexander, Hearts of Hope
- 3 Apr 1998, VIC Australia
- Zachary (HLV), Zachary's Zoo
- 10 Mar 1998, US
- Leif Jude Greiner-Gansen, Glimpses of Molly and Leif, Leif's Surgeries
- 11 Aug 1998, Iowa USA
- Kacy, Kacy's Courage
- 13 Nov 1998, US
- Grace, Grace Mylchreest’s Home Page
- 31 Dec 1998, Liverpool England
- Conner Ethan Wilson-Hitchen, Conner
- 19 Jan 1999
- Thomas Goodfellow, Hearts of Hope
- 24 Sep 1999, SA Australia
- Brock, Brock's Special Heart
- 16 Dec 1999, US
- Brett, Brett's World
- 18 Feb 2000, USA
- Ashford Giovanni Valentine Franks Jr, Ashford's Story
- 28 Feb 2000
- Derek Michael Pederson, In Memory of Derek
- 22 May - 13 Sep 2000, USA
- Zachary Nelson, Brett's Special Heart Friends
- Jul 2000, USA
- Raiden, Raiden's Fight
- 1 Aug 2000, USA
- Daniel, Raiden's Fight
- 26 Aug 2000 - 7 Jun 2002
- Lauren, Lauren's Heart
- 30 Aug 2000, Texas USA
- Taylor, Hearts of Hope
- 22 Sep 2000, NSW, Australia
- Benjamin Thomas von Eitzen, Hearts of Hope
- 28 Sep - 3 Oct 2000, NSW Australia
- James, Hearts of Hope
- 3 Oct 2000, Australia
- Quinn Maxfield Keller, Quinn's Broken Heart
- 21 Oct 2000 - 9 June 2003
- Sam, Hearts of Hope
- 28 Oct 2000, Australia
- Joshua Ian Truscott, Hearts of Hope
- 10 - 16 Nov 2000, Australia
- Cameron, For Cameron
- 27 Nov 2000, USA
- Bradley, Hearts of Hope
- 19 Jan 2001, Adelaide SA Australia
- Lily, Hearts of Hope
- 30 Jul 2001, NSW Australia
- Ayden, Hearts of Hope
- 25 Sep 2001, Perth WA Australia
- Molly Sallyanne Lloyd, Hearts of Hope
- 26 Sep 2001, UK
- Joseph David Óvári, Hearts of Hope
- 4 October 2001, Canberra ACT Australia
- Casey Court, Hearts of Hope
- 10 Oct 2001, Darwin NT Australia
- Jacob Lamb, Hearts of Hope
- 9 Nov 2001, VIC Australia
- Noah Amarant, Hearts of Hope
- 14 Nov 2001, Stawell VIC Australia
- Deon Weslby, Hearts of Hope
- 4 December 2001, NSW Australia
- Phelicity Brooke-Lyn, Hearts of Hope
- 18 Jul 2002, USA - NSW Australia
- Bradley White, Hearts of Hope
- 24 July 2002, Hobart TAS Australia
- Otis Foster, Hearts of Hope
- 27 September 2002, W.A. Australia
- Nathan Garcia, Hearts of Hope
- 3 November 2002, W.A. Australia
- Chanice Cull, Hearts of Hope
- 7 November 2002, N.S.W. Australia
- Haydan Olney, Hearts of Hope
- 13 November 2002, N.S.W. Australia
- Madeleine Grace, Hearts of Hope
- 24 March 2003 - 2 July 2003
- Cameron, Hearts of Hope
- 24 April 2003, New Zealand
- Georgia Kat Macaulay, Hearts of Hope
- 27 May 2003 - 3 June 2003