‘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.

 

Be social with us - our latest tweets and posts

    Nominations are open for our next Brave Hearts Awards 🏅

    We know that a lot of our young people miss out on awards and trips at school and we feel that they, like every young person should be rewarded for what they learn and how they develop 🙌

    If you know of a young person with a single ventricle heart aged between 8-17 that has achieved and grown, take a look at our list of awards on www.lhm.org.uk/youth-zone/lhm-brave-heart-awards/ 👈

    Nominations will close at the end of January 2020 📅
    ... See MoreSee Less

    8 hours ago  ·  

    View on Facebook

    👋 Meet Archie, he is 7 years old and was born with Tricuspid Atresia (TA) a rare congenital heart condition. Archie had his Fontan procedure in September at the University Hospital Southampton, Ocean Ward. The aim of the Fontan procedure is to give a child as much energy as having only half a pumping heart will allow. If surgery has gone to plan the children will gradually recover from the operation and go on to gain far more energy than they had before. He had a longer stay than anticipated, due to a number of complications, but was discharged in October.

    ❤️ “The staff, nurses, doctors, consultants and surgeon were utterly wonderful and we can’t thank them enough. However, it was a consultant anaesthetist, Dr Andy Curry, who stood out in Archie’s mind. His bedside manner, and the relationship of trust that he managed to build up with our very anxious little boy, was astounding to watch. So, on ‘Dress as your Hero Day’ at school, Archie wanted to dress as his hero…”I want to dress as Dr Andy because he helped save my life and he’s my friend”…gulp” – Archie’s mum Charlene.

    😻 We have been blown away by this story. A month after coming home from hospital and Archie is raising a smile, dressing up as his hero and on his way to school. This is one strong boy, as are all of the children in the LHM family.

    🙌 Give this post a share to show your support of Children’s day.

    #ChildrensDay
    University Hospital Southampton NHS Foundation Trust
    ... See MoreSee Less

    1 day ago  ·  

    View on Facebook