Carl & Eunice Johnson – South West London

County Representatives

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Lisa with Seth in 2004

Our daughter, Lisa, was 30 years old when she died from left ventricular failure due to SADS. She lived with us and her little boy, Seth, in the loft conversion and her brother Gareth who also lived at home with us.

Our story starts on November 29th 2006, I was leading a conference for teaching assistants as part of my work in Hammersmith and Fulham Children’s Services.
At lunch time my phone went and it was Eunice to say that her brother had suffered major brain haemorrhage and was in intensive care. So, that weekend we went to Liverpool to see him and decided that we would go again the week before Christmas as he was now out of intensive care but not out of danger by any means.

So on the morning of December 13th Eunice and I set off for Liverpool again just as Lisa was leaving with Seth, her 6 year old boy, to drop him off at school on her way to work at Manna Christian Centre in Streatham. This was to be the last time we saw Lisa alive.

The next day we spent with Eunice’s brother and decided to go to evening visiting and then come straight home on the evening of December 14th. We stopped for coffee on the M42 and would usually have phoned home to say we were on the way, but for some reason this time we didn’t.

We arrived home at about quarter to midnight and, as we went in, Gareth’s girlfriend greeted us and said that Gareth, our son, had gone to hospital with Lisa because she had collapsed or something – I can’t quite remember what she said now. Then Seth appeared in the hall and I thought ‘what is he doing up at this time of night?’.

It still never occurred to us in a million years what had transpired that evening before we arrived.

At about midnight Gareth came back from the hospital obviously very distressed and said he had something to tell us. We went into the front room and he sat down on a chair and said simply “Lisa died tonight”.

I can’t remember a lot about the next couple of hours but I remember being taken to the hospital by Gareth’s girlfriend’s dad. Eunice, Seth and I sat in the back with Seth in the middle for the next fifteen minutes or so till we reached the hospital. We went into A&E and this lovely doctor took us aside and explained that Lisa had been admitted having suffered what appeared to be a heart attack. She said they had tried for an hour to revive her but was so sorry but there was nothing they could. She was crying with us.

I cannot describe the trauma when Gareth uttered those words “Lisa died tonight”. I turned to Seth and repeated “Mummy’s dead” I think to convince myself as much as tell him. The whole thing ripped through us like an emotional tornado, lifting us up and throwing every which way. I just sat on the floor in the hall sobbing over an over again “This cannot be happening to us”.

This was nothing compared to the effect of being taken in to see Lisa on the table in the hospital room. I will never, ever forget the minutes we spent in that room. It might have been half an hour or less, I don’t know. She lay there so still, yet so alive, so still, yet clearly dead. I begged God to send my baby back, but He didn’t; or, as Eunice said some time afterwards, perhaps she didn’t want to come back. Whatever, we now didn’t have our Lisa, Gareth didn’t have his sister and Seth didn’t have his mummy.

We went home that night in total trauma. Somehow we got through the night with Seth huddled in between us. He was only 6 years old and what sense could he make of what had happened? What had happened that evening?

As we were driving home, Lisa had put Seth to bed at about half past eight and came down to share a beer with her brother. About nine o’clock, Seth called and Lisa went upstairs, spent about 15 minutes settling him, tucked him in, put his light out, went to her room next to his and dropped dead. The first thing Gareth knew was when he heard Seth shouting “Gareth, mummy is making a funny noise”.

Gareth rushed upstairs to find Lisa on her bedroom floor. He put Seth in his room on the Playstation, phoned 999 and started CPR until the ambulance arrived about ten minutes later. When the ambulance had taken Lisa he phoned his girlfriend to say what had happened and she and her dad came across. He took Gareth to the hospital to see Lisa but, of course, she was already dead when she left the house. This was when we arrived home for Liverpool………

The next two weeks included Christmas. Lisa had already got all of Seth’s presents in so we ‘did’ Christmas while we waited for the funeral on December 29th. Our church was amazing as they cooked meals for us and generally kept us going when we couldn’t do things for ourselves. We were very fortunate, too, in having a fantastic coroner in Croydon who telephoned us personally the day after the autopsy to explain exactly how and why Lisa had died so suddenly. We were put in touch with CRY immediately and fast tracked for a family screening in January 2007 at St. George’s Hospital in south London. We cannot praise the team enough. They were so understanding and supportive and helped us begin to make some kind of sense, if ever you can, of what had happened only a few weeks ago.

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A priority for us was to secure Seth’s future. Lisa was a single mum so we went through the family court and by March had secured a residence order that gave parental responsibly for Seth and security of care for him.

So Eunice and I were parents again in our late 50s.

The parents of Seth’s friends have been fantastic over the past 6 years – too many stories to tell – and had they helped us to rediscover ourselves as parents again by their warmth and, kindness and friendship.

So much has happened over the past 6 years since Lisa died, so many changes and challenges, so much despair, and joy.

Getting to know and work with the team at CRY has really helped us and we now feel very proud every time we represent this fantastic charity and help the amazing work that it does in working to prevent families having to go through the trauma as we had to.