Heart warrior Reggie has a heart condition called Hypoplastic Left Heart Syndrome (HLHS) which was diagnosed before he was born.
As Reggie approaches his 6th birthday, mum Michelle shares with us her family’s story…
My son Reggie is 5 years old. He was born with half a heart (HLHS).
We were diagnosed during pregnancy, and I was so worried.
The Leeds Congenital Heart Unit were amazing by showing us around Ward L51 (the children’s heart ward) before Reggie was be born so we had an idea of what to expect.
Reggie was born on 1st September 2016 and the care for both Reggie and me was fantastic. Like the help from liaison nurses who often popped in to see how we were. The nurses were like family, and nothing was too much trouble.
As we live in Grimsby, the room we were given at Eckersley House (funded by CHSF) was so homely and just what we really needed after the worry and stress of Reggie’s surgery. Myself and my husband took it in turns to stay with Reggie once he was out of HDU.
There are many faces that I often think about while we’ve stayed on Ward L51. Those faces were my rocks on my difficult days. I just don’t think they realise how important they are – not only to the patients but to the parents and siblings.
The CHSF Katie Bear teddy was given to Reggie both times he’s had open heart surgery, along with a medal and a certificate.
The day Reggie received his Katie Bear for the first time I was so emotional. It was the most precious medal Reggie could ever own. It showed his strength.
We also met so many other families who, like us, were having a long stay and they are still our friends now.
Reggie had a little friend called Emillie that he had his Norwood with, and also found themselves having the Glenn together too. I wonder if they’ll also share their Fontan?
I honestly cannot thank Children’s Heart Surgery Fund enough for their continued support over our journey. And of course, the surgeons, doctors, nurses, domestic staff, play therapists…thank you!
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region. We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
Feedback from heart patients and families tells us your story will help others dealing with a diagnosis of CHD to realise they are not alone and that there is support available from CHSF.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
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