Alarm bells rang when our baby boy started drinking less than usual

When we were told our newborn baby, Charlie, had heart failure, it was so hard to understand.  

One day he was fine. The next he was surrounded by doctors being resuscitated.

Nothing can prepare you for that. 

Before my wife, Linda, fell pregnant with Charlie, we had suffered the heartbreak of two miscarriages.

Thankfully, her pregnancy with Charlie and his birth in March 2022 went well and we couldn’t believe how lucky we were to take our little boy home. 

He’d been there for a month when, one day, he started drinking less and was sleepier than usual. That evening he wouldn’t stop crying and his breathing became noisy.

Despite not wanting to be overly anxious first-time parents, as a doctor myself, we thought something was wrong, and we called 111 who told us to take him straight to A&E.  

When we arrived at the hospital, Charlie was floppy and looked awful.

A nurse ran him into the resuscitation area and within five minutes he was surrounded by 10 to 15 doctors and nurses.

I could hear the staff talking about Charlie’s terrible blood results and I knew then that he was extremely unwell and close to dying.

Not knowing how to tell my wife how serious the situation was, I just hugged her. I felt helpless.

As the team went to intubate Charlie, he went into cardiac arrest. I couldn’t shield the horror from Linda any longer and we had to watch them doing CPR on our tiny baby.  

The medic in me knew just how bleak the situation was. Seeing how long Charlie was having CPR – nearly 20 minutes – and how bad his blood tests were, I truly believed we were watching our baby boy die.

We were in shock. Our world had been turned upside down in a matter of minutes so we just wanted to be close to our baby and to hold his hand so he knew we were there with him. 

Miraculously though, the doctors managed to stabilise him and took him to intensive care.   

Sadly, we were then told that Charlie was in severe heart failure with less than 10% function.   

He was diagnosed with dilated cardiomyopathy – a condition where the muscle walls of the heart are so stretched and thin that they cannot squeeze properly to pump blood around the body.

A month later, the genetic test results confirmed Charlie’s heart problem was due to a new mutation affecting his heart muscle. Because it is a genetic cause, there is no treatment to help his heart recover and Charlie would need a heart transplant.

This news was devastating. He was just three months old when he was placed on the transplant waiting list. And that’s all we could do too. Wait. 

After five months in hospital, the oral medications he was on helped his heart cope enough that he was able to come home again. Things finally started to feel more normal, so we could take him to the playpark and he could meet all his cousins.

Charlie has always surprised us with how happy he is and how much energy he has despite how bad his heart function is. We celebrated two Christmases at home and the following summer, we welcomed Charlie’s sister, Lily, who has a healthy heart.

But in February 2024, we had noticed Charlie was struggling to keep on weight and was losing his appetite. We were worried his heart was getting worse, despite the medications.

One day shortly before his second birthday, he was very sweaty and had a fever. He’d had several viruses before and things had been OK, but this time when we took him to Bristol Children’s Hospital they gave us the crushing news that his heart function had rapidly deteriorated again and he needed to put on a ventilator.

We were devastated that we were going through this all again. Not knowing how things would end, we took photographs as a family in the intensive care unit.

We hugged Charlie in case it was the last time he would be awake with us and told him how much we loved him and how proud we were of him. 

After Charlie was put on a ventilator, we were transferred to Great Ormond Street Hospital (GOSH) where doctors told us Charlie’s only hope to survive until his heart transplant was to be put onto a ‘Berlin heart.’

That’s a mechanical pump with two tubes the width of hosepipes bringing blood to the pump and back to Charlie. The pump and tubing are see-through and need to be checked for blood clots every few hours in case they cause Charlie to have a stroke.

We’d known for a long time that this was a possibility, but it was still shocking to see him after surgery.

Thankfully the Berlin heart has stabilised Charlie’s condition, and we’ve been living at GOSH ever since. But we know it is not a permanent solution.

All the time Charlie is on this machine, he is at risk of a devastating stroke or life-threatening infection. As parents, it’s terrifying. The fear never goes away. 

We also know just how much he’s missing out on. He’s two years old now and wants nothing more than to run around, but he can’t.

He can’t even go outside unless it is completely dry and he doesn’t get to play with other kids. We can’t even give him a proper hug.

But we also know that at GOSH, Charlie has been given the best chance to live and to experience some childhood. I don’t know what we would do without the visits from the GOSH school teacher, the music therapist and therapy dogs which Charlie loves so much. They make every day just a bit more manageable. 

Heartbreakingly, Charlie’s new heart can only come after another child has passed away. But it’s very rare that a child’s heart becomes available so – even though he is the highest priority – we may still be waiting months or years for a transplant.

We try not to think about how long the wait could be because it’s too difficult. We just go to bed every night praying that we get the call.

If Charlie got a heart, it’s difficult to articulate how we would feel. Grateful doesn’t cover it.

Having a new heart wouldn’t just save Charlie’s life, it would give him a life.

And while it’s painful to think about, if the worst happened and he could still donate his organs to another child, we wouldn’t hesitate to help another family in the same situation as us.

If we would accept an organ to save our child’s life, how could we not give this to other families going through the same. 

MORE : Bionic suit marathon fundraiser Claire Lomas dies in accident

MORE : I asked my partner to plan a date night – his idea of romance left me shocked

MORE : I stopped wallowing in self pity after my terminal cancer diagnosis