FSID's Regional Development Officer, Carrie Langford, talks about the death of her son Merrick, and the decision to find out if tissues samples from his postmortem had been kept and whether they could be used to help futher research into cot death.

"When the news of retained organs of babies and children hit the press a couple of years ago I felt great sympathy for the parents concerned. However, as the parent of a baby who had died as a cot death I felt it did not affect me.

My son Merrick had died just before Christmas in 1983, aged 18 weeks. He had a cold and had seen the GP the day before he died who confirmed that it was nothing to worry about. Yet 24 hours later we found him dead in his carry cot after less than an hour’s journey in the car.

My husband and I share beliefs that made us feel that Merrick lived on forever in our memories and thoughts, and that as long as his body had been treated respectfully, it was of little relevance to us as to what had happened to it.

After Merrick’s death we received great support from the local FSID group and after five years I started work for the Foundation as a Regional Co-ordinator. In 2002, at a training session, I met Dr David Drucker from Manchester who was researching a faulty gene which could make babies more susceptible to an infection.

Later in 2003, I learned that it was possible for Dr Drucker to extract genetic material from histological tissue blocks and slides that are often taken at post mortem examinations, and that he needed more samples from babies who had died suddenly and unexpectedly to test.

I decided to find out if there were any samples left from Merrick’s post mortem so contacted the organ retention helpline at my local hospital. My request was treated with great sensitivity and the organ retention co-ordinator was delighted to have what she described as a “unique” enquiry for samples for research purposes.

I found the arrival of the letter telling me there were seven tissue blocks at the hospital a very emotional event. I know I would have been devastated if no samples were found but the positive news was very moving. The next day I spoke to Dr Drucker and he confirmed that the 19 years that had elapsed since Merrick’s death made no difference to the samples. I also requested that if the samples were not all used in this particular research project they were to be retained for any further studies.

I accept that I will never know why Merrick died and will never get a personal result from this research study, but I feel a great sense of satisfaction that, after all these years, Merrick’s death could contribute to knowledge that might prevent future sudden infant deaths."

For further information on donating tissues for research please call FSID’s Helpline on 020 7233 2090.