For a month now Romeo has been showing a few signs of worsening heart failure, I’ve been back and forth to our local hospital a few times regarding this. Every time they told me he was fine.

I hate that word “fine”, he’s not fine. I know my baby better than anyone else and I’m glad I stuck to my guns and fought for him. After he put on 7 ounces in one week (fluid retention) I decided to call our cardiac Liason nurses and they arranged for us to come in for a 3 day admission in Southampton. He has basically come in for a full MOT, he’s seen gastro, optometry, genetics and neurology but it took a while for the cardiologist to come and see us. I asked to speak to them and once again she said he’s “fine”, I disagreed and asked someone else to look after all the symptoms he’s been showing at home. They took a chest x-ray and his heart is very enlarged and finally his consultant agreed something is not right.

1 week later he had an investigatory cardiac catheter procedure, I signed the consent form, nothing too major on there other than risk of stroke. He went down to cath lab at quarter to 9 on the 27th of February, by 11am I started getting that sinking gut feeling something wasn’t right. About 15 minutes later the consultant came to see us to explain the findings. He told us that the pressures in his heart are very high he has a severe leak in his pulmonary valve and a moderate leak in his tricuspid valve. The pumping chambers are stiff and the collecting chambers are extremely dilated. He also mentioned his heart stopped twice during the procedure but with 10 seconds of chest massage he was okay. This immediately alarmed me, he said it’s uncommon but not unusual so I trusted what he said and we went round to recovery about 15 minutes later to collect him.

In recovery they were getting the trolley ready for me to jump on and hold Romeo to be wheeled back to the ward, he was extremely unsettled and I immediately knew he didn’t look right. As soon as he was placed into my arms I said to the nurse he doesn’t look good, his legs were mottled and I could see he was in a lot of distress. She proceeded to open his nappy to check his groin where the catheter would have gone in, as soon as she touched him he had a breath holding spell only this time it wasn’t just a breath holding spell, his heart stopped whilst he was in my arms.

He turned purple and floppy and completely unresponsive, the nurse said can we get some help round here and I screamed at the top of my lungs “HELP!” and they put the crash call out. I just put him down on the trolley and jumped off into Jimmys arms, all the doctors ran out of the cath labs to assist Romeo, they ushered us off down the corridor. I was screaming and crying and could not physically hold myself up, Jimmy had to keep hold of me as my legs had completely given way. Everything was a blur, I don’t know how long we were in there. I don’t remember who the people comforting us were, I don’t remember them getting me a chair or cup of water all I could think was please do not let our baby die! This wasn’t even supposed to be a risk in the catheter procedure, let alone in the recovery room with us there. How and why is this happening? What would have happened if this had happened in the corridor on the way back to the ward?

They took us back to the ward into the quiet room, I’m not even sure if they managed to bring Romeo back round or not by this point. The cardiologist came to see us, he said he’s okay, he’s screaming (this was a little white lie but it did reassure us) and they were going to take him straight back into the cath lab to place some temporary pacing wires. A little while later he came back and said he’s managed to place the pacing wires successfully but they needed to take Romeo to intensive care to wake him up there so it would be a little while before we could see him again. He also said in 27 years of his career he has never seen this happen, Romeo went into complete heart block in his left side most likely due to them touching something in his heart during the procedure and throwing off his rhythm but they were not 100% sure how this happened.

When we got to PICU I wasn’t expecting to see Romeo completely sedated and ventilated, this was a shock to the system, more so than after his open heart surgery. The doctor in the PICU was actually the doctor who resuscitated Romeo so she explained everything that happened. Initially I thought he only had a shot of adrenaline but actually he had everything, chest compressions, defibrillator, oxygen and a whole host of drugs to bring him back round. She explained that as he had 1 minutes worth of CPR it was unlikely that he would have suffered any brain damage but they have taken bloods to rule it out. They extubated and woke him up a couple of hours later and it was the biggest relief seeing my baby awake and alive!

The next day we got discharged from PICU back up to the ward in high care. When we left PICU they handed me the discharge paperwork and astonishingly enough Romeo arrested twice in recovery, once in my arms and another time after he was ventilated. Since Thursday Romeo is doing really well, he hasn’t used his pacing box once however he will be getting a permanent one fitted next week as they can’t rule out that it won’t happen again, he has finally managed some little smiles and giggles although today he spiked a really high temperature. I’m hoping this doesn’t come back as an infection as this could be extremely dangerous as currently he has pacing wires connected to his heart and if these let in an infection it could be critical.

The next plan is for Romeo to have his 2 valves replaced but this operation carries massive risks and will mean that he will need many more surgeries in the future for replacements. I think for now they want to do the pacemaker as a safety net and we will continue to manage his heart failure with medication until he is a bigger size for the valve replacement surgery to be a success.

If anything the last couple of days has shown us just how precious life is, just how strong Romeo is and that no matter what new diagnosis get thrown at us we just want our baby boy here with us! 🖤