Heart warrior Isabel is 8 and lives in Worksop. She had open heart surgery at Leeds when she was 3 months old.

Mum Natalie tells us about Isabel’s CHD journey, her daughter’s diagnosis of Autism and Sensory Processing Disorder and the challenges of treating both conditions together.

Isabel’s Journey
told by heart mum Natalie

After attending my 36 week scan at Leeds, we were told it was time to deliver. Isabel arrived at 2:43pm on 29th November 2013, baffling the doctors who expected her to be “blue baby”. Isabel’s diagnosis before birth was Transposition of the Great Arteries (TGA), Double Outlet Right Ventricle and further ventricular septal defects (VSD).

 

Due to having a c-section I couldn’t get out of bed for several hours, so my husband went to sit with Isabel and took some videos of her. At this point, Isabel was on the neonatal ward whilst I was three floors below on maternity.

 

I remember him coming back and saying the doctors would like to speak to us. It appeared that after her scan that her heart condition, although still serious and complex, isn’t what they first thought. Meaning she wouldn’t technically need surgery within days of being born.

Isabel after open heart surgery at 3 months old

After speaking to the cardiologist, she explained that Isabel still had a rare and complex heart condition, but it wasn’t TGA. She actually had Tetralogy of Fallot, Double Outlet Right Ventricle and VSD.

 

Isabel wasn’t blue and so therefore didn’t need the balloon fitting and wouldn’t require surgery straight away. We were however told that she could have cyanotic spells, where her oxygen levels drop. Isabel left Leeds at six days old and was transferred to our local hospital in Worksop for a further week’s stay.

 

Everything was fine with Isabel’s heart, we had just a few hospital stays due to jaundice. Then in February 2014 things started to change. We saw her cardiologist Dr Perez at Worksop and Isabel appeared to have a spell whilst he was examining her. Again, we were told about the threats of these spells and to look out for them.

“CHSF have been amazing over the last eight years. Especially for providing us with accommodation as we live 50 miles from Leeds”

Two days later at home Isabel was consistently having cyanotic spells. Loud piercing screams and her whole body was blue. We took her straight through to A&E who had Isabel hooked up to monitors. They had her white heart file in hand (file given to all parents) and they were on the phone to the emergency cardiac doctor in Leeds.

The doctor in Leeds was giving step by step instructions to our local A&E on what needed to happen, and they had the air ambulance on standby if they couldn’t stabilise her.

 

Thankfully they got “Propanol” sent over from Sheffield – a medicine to keep Isabel’s heart calm – and she was later transferred to Leeds by Embrace, the Children’s emergency ambulance team. I was allowed to go with Isabel and had been told that on arriving in Leeds Isabel may need emergency heart surgery.

 

Isabel was discharged three days after arriving but then underwent life-saving open heart surgery on 18th March 2014. Isabel recovered well and was able to go home six days later.

Isabel recovering after open heart surgery

Isabel, 8, loves being outside and on the go!

Isabel is now eight 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. Hopefully the MRI will show when more surgery is possibly needed.

 

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.

The heart ward go above and beyond to make Isabel’s hospital visits as stress free as possible

When Isabel was in for her MRI in December 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 3 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.

 

We will tell Isabel she’s going to the hospital the night before appointments so she’s aware of the change in routine. Isabel is always happy to take her clothes off for her scans due to clothes being a sensory issue for her.

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 eight 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!

Photo: Isabel with the CHSF heart tree outside Ward L51

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 families tells us your story will help other patients and families dealing with a diagnosis of CHD to realise they are not alone and that there is support available from CHSF. Share your story here.

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.

More from the blog…

Danny #ScarSelfie

Danny #ScarSelfie

Danny Hirst, 20, was born with a hole in his heart and had it repaired by open heart surgery in Leeds when he was 11. A year later, he had further open heart surgery to replace his aortic heart valve.Danny told us how he feels about his scar, and how life is treating...

Oliver: “My heart story”

Oliver: “My heart story”

Meet Oliver from Hull who was born with a heart condition called Tetralogy of fallot. Thanks to the life-saving work of the Leeds Congenital Heart Unit, Oliver is thriving and has been able to pursue art as a hobby and, more recently, a career in finance!Now 22,...