Heart warrior Isabel is 10 and lives in Creswell. She had open heart surgery at Leeds when she was 3 months old.
Isabel featured on our blog for ‘Warrior Wednesday’ back in 2021 and the piece details more of Isabel’s early years and medical treatment. Read it here.
For World Autism Day Isabel’s mum, Natalie, tells us more about her daughter’s diagnosis of Autism and Sensory Processing Disorder and brings us up to date below…
Natalie told us:
“Isabel’s diagnosis was Tetralogy of fallot, Double outlet right ventricle (DORV) and Ventricular septal defect (VSD) and underwent life-saving open heart surgery on 18th March 2014. She recovered well and was able to go home six days later.
“Isabel is now 10 years old and she has had two further visits to Leeds. First in May 2018 for a sedated echo and in December 2021 for an MRI.
“Looking at Isabel it’s hard to tell she has a very complex heart condition/heart defects. Her heart is now over enlarged on the right-hand side and didn’t reduce in size after surgery.
“She also has two very leaky heart valves that are closely monitored every six months.
“When Isabel was in for her MRI in December 2021 the play specialists went above and beyond in making sure Isabel was comfortable and settled on the ward. They had previously met Isabel for her sedated echo three years earlier. They made Isabel’s bed all sensory for her.
“This included lights that could be changed and sensory toys that helped relax Isabel for her time in hospital. We often distract Isabel with our iPhones or bubbles or strawberries. When she is having a scan, she’s ok until she feels the jelly and then it is a struggle to get Isabel to lay still and cooperate.
“Isabel was diagnosed with Autism and Sensory Processing Disorder just after her 4th birthday. She is also non-verbal with lots of sensory needs.
“Isabel is a very active little girl who loves nothing more than to be constantly on the go so for that reason she finds hospital appointments to be quite stressful.
“She loves to be moving about whether that be climbing, jumping, running etc.
“We were told a few years back if she wasn’t as active as she was then she would have needed her next operation by now.
“We attend an Autism friendly gymnastics session on Sundays. This has helped Isabel so much with her sensory needs, and being around other children is great although she’s known as the little daredevil by the other parents!
“We would like to thank Children’s Heart Surgery Fund for everything they do in supporting the Leeds Congenital Heart Unit.
“Your support has been amazing over the last 10 years. Especially for providing us with accommodation. We live 50 miles from Leeds, so this was one thing we didn’t have to worry about!”
Research shows that children with congenital heart disease (CHD) are around 33% more likely to receive a diagnosis of autistic spectrum disorder (ASD).
At Children’s Heart Surgery Fund we constantly looking at ways we can better support heart families in our region with an additional diagnosis of autism.
We are committed to capturing the voices of these children, young people and their parents, to fully understand and build the support they need from CHSF and the NHS staff teams at all stages in their health journey.
It’s only with your support that we can keep being their for the thousands of babies, children and adults like Isabel living with a heart defect in our region. We’re there for their families too!
Could you make a donation towards our life-saving work?
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