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Fatima Al-zahra Farooq
21st February 2019
Published by HLH18 at 22nd February 2019
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  • Stories from the camp
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Theo Fry
#bemoretheo

Age 2

Theo wasn’t diagnosed with his congenital heart disease until after he was born. He was just 8 days old when he turned blue at home. We called an ambulance and were rushed to the nearest hospital. After what felt like hours and lots of scans, tests and investigations later they had come to the conclusion it was his heart. We were told to prepare for the worst as Theo was just so unstable. He was intubated in AnE and NWTS were called to assist with transporting him to Alder Hey.

That same night we arrived at Alder Hey and they did and echo at 2am which told us he had an interrupted aortic arch, an ASD and a VSD. Whilst this felt like a living nightmare, they gave us hope that we might not lose our boy; they said there was an option for surgery but in order for him to have surgery he needed to stabilise.

5 days later, at 12 days old, he had his first open heart surgery which was over 10hrs long. Surgery had gone well (despite having a cardiac arrest on the operating table!) but his recovery was going to be tough. He spent 3months recovering – which included him having another cardiac arrest, sepsis and seizures . On 4th July we finally made it home and we managed to stay there for about 4months.

In November Theo picked up a nasty virus which his heart just could not cope with. We originally were admitted for 24hr monitoring but this turned in to a HDU admission, a cardiac arrest which required 12minutes of resuscitation, 3 ICU stays, catching Influenza B, approximately 25 peri arrests and a second emergency open heart surgery….and 6months as an inpatient.

After surgery Theo’s recovery was thankfully amazing in comparison to his first surgery and given his critical state going to surgery- extubated and back on the ward within 48hrs. He amazed everyone. He still has some ongoing cardiac problems but we thankfully have an amazing Cardiac Team at Alder Hey looking after him.

We are so, so lucky to have access to such an amazing NHS and we have never been more thankful to them. Without the amazing care Theo received, he would not be here today. We know not all families have this luxury which is why we want to help raise as much money as we can to help those less fortunate than us.

#bemoretheo

Written by
Fauve Syers
Theo’s Mum
Team 1c

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Healing Little Hearts is a UK based registered charity, funded entirely by our supporters. We receive no financial assistance from governments.

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© 2019 Healing Little Hearts. All Rights Reserved.