Before he was born, Arthur from Rotherham was diagnosed with Hypoplastic right heart syndrome and RV coronary dependant circulation.
As told by mum, Jessica, read about Arthur’s journey so far and how his family have been supported by CHSF since day one…
Mum, Jessica, told us:
“Arthur was born in Leeds General Infirmary on 22nd May 2021 and cared for outstandingly from the offset. He was born with hypoplastic right heart syndrome and RV coronary dependant circulation which was diagnosed prenatally.
“He had his ductal stent at two days old by Dr Jamie Bentham and after almost a month was allowed home – NG fed with an oxygen saturations monitor, to keep an eye on his SATs.
“High risk reviews were fortnightly until Arthur had his Glenn circulation by Dr Jaber at 6 months old, and then he was under Dr Deri at a satellite clinic in Rotherham.
“CHSF have been on hand since before Arthur was born.”
“Dr Deri gave us the confidence to take Arthur to Disneyland Paris. We carefully planned this as Arthur is unable to fly, but it allowed us as a family to make amazing memories that will last forever.
“Arthur recently went in for a procedure and investigations and is awaiting further open heart surgery for a valve repair. Hopefully within the next year he’ll have his Fontan.
“Children’s Heart Surgery Fund have been on hand since before Arthur was born.
“Finding out your child is going to be born with a very complex heart and that they will have to undergo so many procedures was hard to understand. We had pointers to informative sites explaining Arthur’s condition, and places where we could see other children just like Arthur, and how other families have adjusted to having a heart warrior baby.
“When I gave birth and Arthur was out of PICU and HDU he went to the ward and I was given a pack of essentials as well as a place to stay, all funded by CHSF, whilst my baby recovered and was strong enough to go home.
“Without an oxygen saturations monitor, Arthur couldn’t leave to come home. However, CHSF funded a SATs monitor so I could keep an eye on his oxygen levels daily and know if anything was wrong or he wasn’t hitting his target (Arthur’s saturations are only 70% where as a ‘normal’ circulation sits at 100%).
“CHSF also provided us with training in CPR so we were educated on everything we needed to help Arthur should we be in such a situation, at any time.
“We use [Katie Bear] to talk to Arthur about his special heart.”
“When Arthur had his Glenn procedure, he received a Katie Bear, certificate and medal which we cherish dearly. Katie even came to Disneyland with us!
“This is such a comforting gift at such a stressful and emotional time, and we use her to talk to Arthur about his special heart. This has helped him gain understanding even at such a young age.
“Again, during this stay we had home-from-home accommodation funded by CHSF and we will eternally be grateful.
“Our aim is to continue raising awareness for CHD and raise as much as possible for CHSF!”
It’s only with your support that we can keep being their for the thousands of babies, children and adults like Arthur living with a heart defect in our region. We’re there for their families too!
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