Harvey's story
Karen's first-born, Harvey, died of meningitis which went undetected despite three hospital visits. She wants his story to be his legacy.
Tell us a little bit about your family, Bridget
Our sons, Scott and Lee are in their forties now, so both have their own children who keep us very busy. We are a very close family. Zbig and I are both retired, and Zbig has an allotment which he enjoys. I used to childmind, so now Zbig and I do the school run with the younger grandchildren.
Would you tell us more about your first-born, Paul?
I was 20 years old when I had Paul. By today’s standards I was shy and inexperienced in life, but children and family was all I’d known as I was brought up with foster children in our family home.
Though my pregnancy wasn’t traumatic, looking back it was difficult as I didn’t know that I was pregnant until I was over seven-months. It was a huge shock during a time we were struggling financially, and we’d missed out on all opportunities for antenatal classes. Everything was a blur.
How did you feel when Paul was born?
Everybody fell in love with him. On my mothers’ side of the family, no boy babies had survived past birth. This made Paul a very special little boy to everybody. He was happy and healthy.
It took me a few weeks to get into the swing of things because of how much of a shock everything had been. The night before Paul died, I remember we went to see a match on a cold day in the pram. When we came back inside, I remember telling my sister-in-law how it had been a struggle, but Paul was really beginning to feel like mine, and there was no mistaking it.
Our health visitor had told us to wrap Paul up warmly in the pram and put him outside to go to sleep, even if he cried. It feels odd to say it now. We’d both been out in the garden, picking up debris from a fallen tree. We later brought him inside, bathed him, fed him and he slept in the pram in the lounge beside us for the evening.
We commented that Paul had been sleeping a while without waking or crying. At 10pm, I went to his pram, and he was lifeless. Zbig ran to our neighbours to use their phone and called for an ambulance. The crew took him to the ambulance, and we didn’t get chance to say goodbye or spend more time with Paul. It was the last time we saw him.
What did you learn about Paul’s death in the months that followed?
Paul’s post-mortem suggested he’d died of cot death. I’d never heard of it. I’d walked through life having never heard of it, and we found out later that there’d been several cot deaths (now known as sudden infant death syndrome, SIDS) in our area before and after Paul. Neither of us understood what had happened, and I had this overriding feeling that it was all my fault. Did I let him get too cold? Did I exercise too much when I was pregnant? Was I too young and naive?
There was no advice on how to cope. People didn’t know how to talk to me, either. People I knew and would speak to daily began crossing over the street rather than talking to me. I don’t think they knew what to say.
How were you after Scott was born?
I became pregnant again a couple of months after Paul’s death. He was healthy, but everyone continued tiptoeing around us, not knowing what to say. Scott brought us joy and trepidation in equal measures. If he slept for longer than 20 minutes, I’d touch him gently to see him move. Every night was a nightmare. It spoilt any chance of a good sleeping routine, but I had to touch him every time I couldn’t hear him breathing. By the time Lee was born, I didn’t do it so badly, but he rarely slept more than two hours in 24! My mum said this was natures’ way of letting me know he’s okay.
When did you become involved with The Lullaby Trust?
I was involved with the Hampshire group of The Lullaby Trust around five years after Paul’s death, and for the first time I connected with other parents who’d experienced what I did. For the next 30 years, I campaigned, fundraised, counselled, raised awareness and met at least monthly with other bereaved parents who wanted to do something to change everything.
Being involved with The Lullaby Trust made us feel as though we were helping ensure other people don’t have to go through what we went through. And things certainly have changed. When both our daughters-in-law were pregnant, they came home from their pregnancy scans with information leaflets about sudden infant death syndrome (SIDS). Before their baby was born, they knew about SIDS and both came to show me what they’d been given. I take a lot of comfort in that. So much has changed for the better that it almost doesn’t feel real.
Now, we continue supporting The Lullaby Trust by donating when we can so they can continue their important work and research. We signed up to the lottery, and our small donation every month felt like we were doing our small bit to help. We were fortunate to be a lottery winner, which was wonderful! We never expected to win anything as I’ve never won anything in my life! But when we did, it came as a lovely surprise and was very useful for us at the time.
How do you remember Paul?
Zbig and I never miss a birthday or anniversary for Paul. We always put something on his grave. At Christmas, we make a miniature tree with food wrapped around for the birds to peck at. One of my biggest regrets is not having more photos of Paul, but we couldn’t afford and those that we have are fading rapidly. We keep his photos in the dark in a box to prevent them from fading, as it’s all we have. Next year, it would have been his 50th birthday. Perhaps we’ll send them to someone who can fix them for us on Paul’s 50th birthday.
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What is sudden infant death syndrome (SIDS?)
Sudden infant death syndrome (SIDS) is the sudden and unexpected death of a baby where no cause is found. We don't know what causes SIDS, but we do know how to reduce the risk of SIDS occurring.