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After such a long drive or long day on the ward, it is so comforting to know that there is somewhere we can go.

News   •   Jun 26, 2017 11:33 BST

"Max has been in hospital for over six months now. And for five of those, Max has been waiting for a heart – a heart which just hasn’t come yet."

Max had been as fit as a fiddle all of his life, so the last thing we expected was to be told that our eight year old son was suffering from heart failure.

He’s always loved life, and every morning he would jump out of bed with ‘va va voom’ and would be ready to embrace the day with zest! Last Autumn though, we began to notice he was losing his spirit. He became very pale, was losing weight and was swallowing big gulps of air as if that was the only way he could breathe. After several trips to the GP and ‘asthma’ diagnoses, Max was finally sent for a chest X-Ray. But over the next couple of days, he began coughing and vomiting so we called 111 who sent an ambulance to take him to Leighton Hospital in Crewe, not far from home.

Max didn’t have asthma at all. In fact his heart was very enlarged and he had a strong heart murmur that could be heard from the front and back. His resting heart rate was 145 beats per minute which is incredibly fast. We couldn’t believe it! That night, we stayed in the hospital by his bedside trying to take it all in. The next day, things got even worse. Max collapsed and was rushed to The Royal Manchester Children’s Hospital. He was admitted to intensive care where it was confirmed that Max’s heart really wasn’t functioning well. It was too big & floppy on the left side, meaning that it could not pump blood effectively around the body. He had a condition called dilated cardiomyopathy.

We were completely dismayed and shocked by the news. There had to be a mistake, surely? I couldn’t believe this was happening to Max. We felt so sorry for him.

Over and over, we would think about how poorly he got so quickly. It never crossed my mind that all of these symptoms had something to do with his heart. And we didn’t have any time to prepare ourselves for this news – a lot of parents find out their child has a heart condition before they are even born, but we’d had eight years with our lively son, and we were suddenly being told that there was a chance that he could lose his life.

Max was placed on a heart drug called milrinone, to help support his heart and blood circulation. He spent a month in The Royal Manchester Children’s Hospital, but there were no signs of improvement, so earlier this year, Max was sent to Newcastle’s Freeman Hospital for a heart transplant assessment. Soon after, he was placed on the urgent list for a donor organ. Our son was now one of many people hoping that they’d be lucky enough to receive a life-saving heart.

We watched Max deteriorate physically and spiritually very quickly. And it wasn’t long before they had to perform open heart surgery to fit a mechanical heart pump – a left ventricular assist device – to pump blood around his body. It is known as a ‘bridge to transplant’. Once fitted, though, we noticed that Max’s lips were pink again, instead of pale and white, as they had been.

Max has been in hospital for over six months now. And for five of those, Max has been waiting for a heart – a heart which just hasn’t come yet. We know that when it does, it’ll happen suddenly. But we can’t spend every day in hope, thinking it could come today, tomorrow or next week. It’s too painful and we’d be setting ourselves up for disappointment – which is not what we want to do. We feel that an ‘opt-out’ organ donation system would work better, as it does in other countries. At the moment, England has an ‘opt-in’ system. This means that there is a big gap between the proportion of people who would willingly donate organs in the tragic event of their death, and the proportion of people who actually carry a donor card, or who make their wishes known to family members.

As we wait for our son’s life-saving heart, one of us remains by his side nearly every hour of every day – he is rarely alone. This is because we’re being supported by a charity called The Sick Children’s Trust which runs free ‘Home from Home’ accommodation across the country, supporting families like ours and keeping us near to Max, while he is in hospital in Newcastle.

Home is far away. It’s over 180 miles and can take nearly four hours to drive from Cheshire to Newcastle. There is no way we could do that journey every day and because of The Sick Children’s Trust we don’t have to. We’re currently staying at the charity’s Scott House, a few minutes’ walk from Max’s bedside which is very reassuring. We have a room with three beds which is a huge help as it means our oldest son, Harry who is 12, can stay with us for long weekends and during the school holidays, which makes all the difference to Max.

Without Scott House, we would struggle to be here consistently for Max. We split the week in half and alternate between Newcastle and home so that both Max and Harry have at least one parent with them at all times. This would not have been possible without the help of this charity. Scott House is an amazing place and without it, not only would we have been crippled financially with B&B costs, but we’d be completely physically and emotionally exhausted – we have to be strong to support Max.

After such a long drive or a long day on the ward, it is so comforting to know that there is somewhere we can go, with all the mod cons. Walking over to Scott House to make food, watch TV in the homely living room, have a shower and a good night’s sleep is so important. The team at Scott House are also really good to talk to. They’re understanding, friendly and supportive, without being over-intrusive, so you feel safe and secure.

Max knows he has a tired heart, and he knows he’s waiting for a new one. He understands that for him to receive it, someone has to pass away, a very difficult concept to come to terms with as an adult, let alone a child. I know Max is nervous about it, and he’s also very nervous about the post-op recovery as he knows how that feels, but he’s looking forward to getting away from the wards and moving into Scott House’s transplant flat, where we will stay as he starts to recover. Max has visited a few times. He loves the garden and the rocking horse. He has even made pizza in the kitchen!

We have been spreading the word back home about The Sick Children’s Trust and all the support the charity has given to us. Harry is fundraising for the charity by doing a 5km park run with our neighbour Neil, and Max’s Headteacher, Mr Goodwin, is doing a 10km run and half marathon. All of this makes a huge difference to our experience and gives us something positive to look forward to and focus on.

Sometimes, Max gets frustrated and sad, but most of the time he is perky and stable. He has become more active recently, taking photographs, playing pool, writing poetry, watching films and going for wheelchair walks to the Freeman Park to see the ducks. He has learnt a lot of medical terminology and he loves the nurses, play specialists, teachers, doctors, cardiologists and all the staff team members that play such important roles in his care.

Max is hoping his new heart will come soon, as are we. But until that day comes we will carry on waiting and remain positive, ensuring that our family stays strong and that we take each day as it comes.

Emma Johnson, Max’s mum

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