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Renley was born with an undiagnosed heart condition called transposition of the great arteries which meant oxygenated blood wasn’t getting around his body. He was ventilated and transferred to Great Ormond Street Hospital at birth for an emergency procedure to create a hole in his heart temporarily, until he had his big operation where his two main arteries in his heart had to be switched over. 

We had to wait until he was 13 days old. This felt like the longest 13 days as we could see him deteriorating as we waited. 

On the 5th September he went down for his operation at 9am. We were told it would be around six hours before we heard anything. After not hearing anything for around seven hours we went to cardiac intensive care (cicu) to see if someone could tell us what was going on. This is where we were told that the operation went well but as they moved him to transfer him back to cicu he had a cardiac arrest. As he was still in theatre the surgeon was able to quickly open his chest again and massage his heart to try and get it to work again. At this point his lungs weren’t working properly so they had to put him on to ecmo, which is a heart and lung bypass to give his lungs and heart some time to recover. 

We were told this would only be for a day. 

At around 9pm, a long twelve hours after we left him, we could see him again. 

By this time he was losing a lot of blood from his chest as his chest had to be left open, covered by a plaster with a little window to see into his chest. 

As he continued losing blood we didn’t know what the outcome would be. After four days they decided to close his chest and he started to improve. The blood loss reduced and they could start waking him up a little. After a week on ecmo they decided to take him off. With a team of nurses and Doctors they slowly stopped the machine to let his heart and lungs take over. We didn’t know if he would cope without it but his little body managed to take over and do what it had to. After another week the Doctors removed his breathing tube. We didn’t know how he would respond but again his body took over and done what it needed to. 

The next three weeks we were reintroducing feeds. Like a lot of cardiac babies he has reflux so it was a lot starting and stopping feeds as they didn’t want to put too much pressure on his still fragile body. 

After seven weeks we were able to go home. He is being fed down his ng tube using a pump so it goes in slowly so he doesn’t vomit. He’s slowly putting on weight, at eight weeks old he is only 8lb 7oz. 

He has started to smile.

He’s Not quite doing what an normal eight week old would do but considering what he’s gone through he is doing so well. 

It was quite possibly the worst time of our lives, not knowing if your baby would make it through. But we’re all home now with his big brothers, starting our life as a family of 5 and ready to do normal things – Including getting his newborn photos done, which we couldn’t wait for!! Not quite newborn but they will be absolutely perfect.