Family Link

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.

  • 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
  • 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
  • Jackson Murray William Eggleton, Hearts of Hope
      22 Oct 2001,  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

Please submit a link if you have a Facebook page, website or family home page recording your personal journey with complex congenital heart disease.