‘There Is Always A Light To Move Towards.’ – Tracy’s Story

Tracy has kindly shared her story about losing her little girl, Orla

Tracy and Tom were excited to go for their 20 week scan for their first child. Their excitement, they recall, was brought crumbling down when they found out that their daughter would be born with Hypoplastic left Heart Syndrome, a cleft lip and palette.

Tracy and Tom were given two choices because her scan showed reduced fluid: wait for Orla to grow and hope she didn’t die, or be induced and have a hybrid procedure, even though she was too small!

We broke down in tears as we realised we were basically being told our precious little girl was very likely to die, but we had to give her a chance of life!

After her surgery, it was extremely difficult to see their little girl all bloated. Despite that, the nurses were shocked at how well she had recovered. Even when Orla was allowed home, they made 2 A&E visits. She even required a catheter.

Unfortunately, after her Norwood surgery, Orla struggled to survive. The doctors opened up her chest a further two times to try and help her, but ultimately, they had to bear the news to Tracy and Tom that Orla was not going to survive.

 At 3.35pm on 9th October 2013 Orla’s poorly heart stopped beating as she lay in her daddy’s arms.

Tracy writes that although this is a sad story, it is a reality for some who go through the HLHS journey. After the New Year, Tracy became pregnant again. She mentions how she really struggled with her feelings about losing Orla and bonding with her new baby.

To read more about Tracy’s story, click here.

 

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    Every child with a single ventricle heart condition should have a Health Care Plan in place in school. It is a statutory requirement. The plan sets out all the ways to monitor and respond to your individual children’s needs. Health Care Plan, HCP’s, can be put in place from the age of 0 to 24 years old. Each Local education authority will have their own plan but they will all cover the same information. For more information on what to include in the plan follow the link www.lhm.org.uk/information/lifestyle-information/education/health-care-plans-for-children-and-you... ... See MoreSee Less

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    Stuck for a Mothering Sunday present? Lucy Houle is giving 10 per cent of all sales of this gorgeous Cobblestone with Hot Pink Handles Medium Tote Bag to Little Hearts Matter! bit.ly/2Tpyo76
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