About 18 years ago, Little Hearts Matter changed Anne Marie’s life. At 4 months pregnant, she went to her 22 week scan and received awful news. The doctors confirmed her baby’s heart had not developed properly and he would have a very serious condition known as Hypoplastic Left Heart Syndrome.
At that time, the information and choices were stark. They were told his quality of life would be poor, he would need lots of difficult and risky open heart surgery, each involving risks of death, organ failure, brain injury. He would be blue and breathless. He would never run, probably have learning difficulties and faced a very uncertain future as surgery was considered palliative.
They were offered a choice of termination, birth with no intervention which would allow him to die, or open heart surgery immediately after his birth and the heartbreaking consequences that could go with it, followed by at least two more huge ops in his early years to just keep him alive and re-route his heart.
They returned home with those three impossible choices and cried. However, a nurse had put a leaflet in their hands from Little Hearts Matter. It was late evening by the time they got home and they had the weekend to make their decision, so they rang the number, not expecting anyone to answer. They did. They were preparing, coincidentally, for their annual Open Day, which would be held that weekend. They explained it was a chance to meet other families on the same journey, talk to the ex- cardiac sister who had set up the charity -and see the older children with the condition.
They drove to Northampton the next day and they were given the warmest of welcomes. They saw children playing and got a chance to talk to their parents. They understood that they were seeing the lucky ones who’d survived the three high risk surgeries and that some were too ill to be there, but there was courage, resilience and warmth in the room that gave them the support to make their decision. Little Hearts Matter would support them whatever that decision was and ensured they were informed- and crucially- not alone.
John’s journey has not been easy in many ways. He sustained neurological damage during one early heart surgery, which resulted in visual impairment, and hemiplegia, restricted mobility on one side plus a motor disorder. At one point they were told he was blind. Luckily, some sight came back but he is still partially-sighted.
During the Fontan surgery they nearly lost him several times, he developed all sorts of complications and multi- resistant infections. At 4 years old he was traumatised by the painful hospital interventions, weeks of nil by mouth, collapsed lung, insertion of chest drains and endless blood tests.
He pulled through and did well at school despite lots of absence for poor health, but at 11 years old they were told he had an autistic spectrum condition. This results in social difficulties that require support and understanding – another challenge in his teenage years.
John is now 17 and has surprised everyone. He has about half-vision, so cannot drive, but is bright, articulate and funny. He passed 9 GCSEs and has an amazing interest in the world around him but often feels like school does not “get it”.
The difficulties that go with his heart condition impact every day and in many ways. His family fought for an EHCP but schools can still forget that when he is exhausted he cannot work well, that if he is breathless he can’t concentrate, that he needs extra time to complete tasks but that extra time is also extra tiring. Classes can be at the top of stairs. Exams were back to back for days on end. He was expected to fit into a system that was not designed with his needs in mind.
What would help? His family would like his school and future employers to understand that there is no easy fix for this, that he needs ongoing support and adjustments but in return they get a wonderful human being who can face adversity with humour and resilience – their gain if they can work with him and support his medical needs.
John gets exhausted every day and needs a shorter day but part time days at school means missing out on lessons and friendships if school does not put in the right support. He doesn’t do PE but they expect him to sit in a room on his own during those lessons and don’t really help him overcome those barriers to inclusion. Often he would come home from school upset, go to his room and then sleep for 15 hours solid.
University open days have been challenging as it’s exhausting for John to traipse around and try to keep up with walking tours. John is not sure if he will manage universtity or if it’s right for him but part time apprenticeships are not easy to find. He is bright but degree apprenticeships are usually 35 hours a week plus a commute.
John is at risk of social isolation because he doesn’t have the same lifestyle as his peers: he can’t go out late, club all night, go on fast rides, drive a car, trek up a hill, swim, make specific plans requiring him to be well at a particular time, to name but a few things. He has found solace in online communities and is a bit of a tech-head.
Emotional issues are ongoing. He has to cope with uncertainty and anxiety at a time when other young people are feeling optimistic, reckless, care-free.. He has an unknown life expectancy but is smart enough to understand the statistics. How do you concentrate on studies when you know you are lucky to make it to adulthood? That knowledge separates you from your peers and robs you of so many different possibilities in many ways.
More funding is badly needed to support patients with single ventricle conditions – more access to counselling, more research into medical developments, more specialist staff and more possibilities for treatment. More part time rewarding courses, paths and careers. More understanding about transplants, more donor organs, more training for schools, more support for families. Little Hearts Matter supports a growing number of survivors, which is fantastic but needs extra funding. If we can raise awareness, we can open up possibilities.