My son Rhys, has had a heart condition called Dilated cardiomyopathy since birth, he was very poorly as a baby and spent the first few months of his life at GOSH. As he has got older he has lived a reasonably normal life with hospital visits thrown in but managed to work full-time in London as a Chef, enjoying life to the max.
As he turned 17 his care was transferred to St Barts hospital.
At the beginning of 2023 on a regular check up at Barts they found a new issue to do with the electrics of the heart, LBBB (left bunch bundle block). They said he might need a pacemaker to deal with this. But they wanted to try some different medication before going down the surgery route. Nothing had changed with Rhys - he was still working full time so we didn't feel overly worried. But in May he picked up a virus and couldn't seem to shift it (although now know that this was his heart deteriorating further).
Rhys turned 21 on the 1st of June and went away with his friends even though he didn't feel great but he wanted to go still. He deteriorated whilst away so as soon as he got back home I took him to our local hospital, Broomfield, and that's where things took a turn for the worse. His heart rate went up to 300 bpm. He was shocked to get his heart into a better rhythm which worked and his heart rate came down but he then stopped breathing.
While they worked on him relentlessly, we were told to call in family. It was the worst day of my life not knowing if my child was going to survive. That day he was worked on for an hour, but they got him back. Obviously there was a serious risk of brain damage due to the amount of time he was down but he was alive. He spent 10 days ventilated on intensive care at Broomfield. His kidneys and liver failed so he was put on dialysis but he finally woke up and there was no sign of brain damage.
Rhys was then transferred to Barts. He took another turn for the worse and had to be resuscitated. Again we were told to gather family as he wasn't going to make it. But he fought through it, he was ventilated again but showed signs that he was fighting. We were then told he would need a heart transplant to get through this and he would need to be transferred to Harefield hospital, a specialist transplant hospital. We waited and waited for a bed to become available and finally a bed became available 2 weeks later.
Rhys was transported to Harefield, still ventilated, on the 30th of June. Within a few days they had him off the ventilator and sitting on the bed. Rhys hadn't got out of bed since the 7th of June so I knew straight away that Harefield was the place he needed to be!
He started going through the assessments to see if he would be suitable for a transplant (we had discovered that his veins hadn't formed properly due to how unwell he was as a baby and might hinder his chances of getting a new heart) but they believed they could do it. But they wanted to try a pacemaker and medication first. So he had a pacemaker fitted on the 24th of July and was discharged on the 25th! It was a scary time knowing he had been under the care of the nurses and had been for nearly 2 months then to be told you can go home- it's scary stuff! But Rhys had had enough of hospitals so he was eager to get out! They had spent the time in between getting him walking again and building him back up.
He has to attend Harefield a lot, seeing the pacing team and heart failure team. Everyone there is amazing.
He had more surgery at Harefield on the 17th of October and he now has a CRT-D and is getting back to some normality. He has gone back to work albeit working less hours and a change in location.
He was invited to Broomfield intensive care unit in December for a discharge meeting and was able to meet the people who worked on him and cared for him whilst he was there in June. Rhys has surprised so many of the professionals with how he has recovered from such a traumatic event. A lot of them really didn't think he would survive so to see him walking around was a shock. He has been asked if his case can be used as learning material in the future as they learnt a lot from Rhys's case. Hopefully it will help someone in the future as well.
This is a very condensed version of what has happened over the past few months and Rhys has been the bravest person I know. I am beyond proud of him and his attitude.
We wouldn't have got through it without the support of our family. We really don't know what the future holds. But for now he doesn't need a transplant. I wanted to do something to raise money for this amazing hospital that makes you feel part of their family and that has done so much for Rhys and will continue to look after him.
I am so pleased to be able to share my sky dive on 8th June 2024 with someone who supported me and Rhys massively during this horrendous time - my sister in law Katie. The date will be almost a year to the day since Rhys got to Broomfield hospital and was resuscitated. We will fundraise together and raise as much money as possible. I don't think I would have even considered doing a sky dive on my own but with Katie by my side I think we will both get through it.
Since Rhys' discharge we have been making lots of family memories and have just had the best Christmas ever, seeing family and just being together which we thought wouldn't happen a while ago. I feel the luckiest person to still have Rhys with us. Alison Mawer