‘Our Little Heart Warrior Overcame All The Challenges’- Colin’s Story

It was the day of our daughter’s 19 week scan and my wife Christine and I were eagerly awaiting the return of Sally and Spencer so that we would know whether 3 year old Joe was going to have a brother or a sister.

Our excitement built as the car pulled on to the drive but instead of the elation we expected to see their faces told us that something was wrong.

Sally, a paediatric physiotherapist, had seen children with Hypoplastic Left Heart Syndrome and was able to tell us what it meant, even though a second scan was required to confirm the diagnosis. Our attempts to offer words of comfort understandably fell flat.

It was decided that Joe would stay with us when Sally went into hospital for Thomas’s birth, in the knowledge that it was likely to be for some time.

At one time it felt like every congregation in Worcestershire was praying for his recovery. It was a massive relief to learn that surgery had gone well.

The next few months were akin to any roller coaster that Disneyland could offer, with highs and lows in equal measure, but our little heart warrior overcame all the challenges that were thrust his way and progressed as well as could be expected.

We were so thankful for the skills and dedication of the team at Birmingham Children’s Hospital and so incredibly fortunate that we were in the hands of the pioneers in the UK for dealing with HLHS.

We were absolutely delighted to see how Thomas’s quality of life improved so much after the Fontan procedure. His progress moved up into another gear, his appetite improved and now, at the age of 14, he eats like any adult.

His school reports are excellent and he is gifted with perfect pitch, according to his piano teacher. His keen sense of humour continuously amuses us and he is looking forward to attending university in years to come.

Through the whole of his life and the months prior to his birth after that first scan our family has received outstanding support from the staff at Little Hearts Matter, to whom we were referred by Birmingham Children’s Hospital. Sally and Chris attended an Open Day before Thomas was born and found great reassurance from seeing children with HLHS behaving like any other children as they enjoyed themselves.(I fully recommend every family to attend an Open Day, if possible).

Since that day the level of support has never wavered and we are so very grateful for the literature that the team produces that seem to cover every aspect of life with HLHS, and with the support line available whenever a family needs to talk.

As a family we feel we owe it to the team and Trustees at LHM to do regular fundraising as our way of saying thank you for their compassion and support and to ensure they can continue to offer the same support to recently diagnosed mothers-to-be.

From the bottom of our hearts we say a collective ‘Thank you’ to Suzie and her team.

You are all magnificent!

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    "Niamh's not feeling 100% today, I asked her if she'd be more comfortable in pyjamas than Jigzy but bless her heart she said "I like to wear this top because it reminds me of the special people like doctors and nurses and Little Hearts who all make me feel better when I don't feel good, so when I wear Jigzy I always smile and it makes me feel better. "Hooray for Jigzy 🥰 xxx"

    And hooray for children living with half a working heart today, just like Niamh here.

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    “Shanniah age 1, HLHS, has truly enjoyed being out and about in the lovely weather so much so she gave herself the shakes 💕”

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    Half a heart, not half a life
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