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  • Writer's pictureRuss Hewer

Thanks you Lydia love Daddy

Updated: Feb 19

Princess Diana
Princess Diana with Lydia

Lydia at Great Ormond Street Hospital
Lydia at Victoria Ward, Great Ormond Street Hospital

The nurse came up to us and said “are you ready”. We both looked up and then she took the mouthpiece out. We were in an enclosed room with a dialysis and life support machine, syringe pump and IV bag. The noise of the life support machine made its own breathing and the lights and bleeps of the other machine filled the room. We were in a far corner of intensive care on the top floor of Great Ormond Street Hospital. It was 2pm on Sunday, 29th March 1998 and Lydia was on our laps. Jan and I were sitting down next to each other and it was at this point that Lydia started to breathe again on her own. We panicked, we thought that it would be quick but seeing her breath again was something we did not expect, it took 40 minutes before she died. I have never experienced this level of pain before and will never again.

The nurse came up to us, she was so kind, she took two pictures of Lydia on a Polaroid camera and cut two clips of Lydia’s hair and placed each picture and hair in two separate brown envelopes. This was our keep sake. Lydia’s life had ended after 3 years in and out of Great Ormond Street Hospital admitted to this wonderful hospital 43 times ranging from half a day to 3 months. We both felt empty and lost as though our own purpose of life had gone, the reason to live had finished and the pain was so intense.

You don’t realise how precious life is until it’s taken away as we all take life for granted.

Lydia was only six and a half years old when she died. She spent nearly 4 years with a chronic genetic disorder call SED (spondylo epi-physeal dysplasia) with nephrotic syndrome and was the only case in the UK at that time. This meant that she was short in stature, suffered from vascular problems and she would eventually have renal failure. She had a blood clot on the brain the day before she died but the NHS have a policy to monitor the vital signs for 24 hours to see if there is any improvement. As human beings, we never want to accept the finality of it all. We think that medicine would save everyone and we have all the procedures in place to deal with any eventuality. We couldn’t accept what had happened after all the care and attention that the NHS had given to us but it now had come to a stop.

Great Ormond Street had become out temporary home living between there and in our cottage in Haddenham in Buckinghamshire. We were both trained to give dialysis which is shown in the picture above together with setting up a syringe and feed pump. Lydia had a catheter that we called Tilly and a gastro tube called Peggy. We had the same set up at our cottage as in hospital and we would have to go through the same sterile procedure as in hospital.

She was so brave!

It’s strange the things you remember of that particular period after all this time. I remember walking from the parents’ quarters of the hospital to the local council offices about a mile away to register her death. I thought that all the paperwork would be taken on by someone else but apparently you have to do it yourself. I also remember how the dead bodies are placed in the hospital mortuary in an orderly fashion and that each body comes out like a chest of drawers with a tag on the big toe.

The whole process of visiting your dead child has changed now as they now move the body into a separate bedroom nearby. I didn’t know this until recently when I was asked by the hospital mortician to visit her mortuary after talking to CDH (Child Death Helpline).

Click the video below for more information on the Child Death Helpline

I have worked as a volunteer for this charity for five years at Great Ormond Street Hospital talking to parents who are going through recent child bereavement on the telephone. We are all bereaved parents manning the helpline and are trained by Great Ormond Street Hospital

At that time, the pain was so immense that I could not see anything positive in this experience, but over the period of time, two experiences have changed my life altogether. The first is the understanding of mortality which gives you gratitude for each and every day as it comes. This in turn gives you a quietness and presence to listen and connect with people with authenticity which is profound and has helped me grow on my spiritual path as a Buddhist and in my business.

The second, is knowing how to priorities your life in terms of friends, being non materialistic, your core values and genuine acts of kindness together with helping people go through the bereavement process.

I would like you to share this article as I want to connect with any parents going through child bereavement who would like help. My name is Russ Hewer, my mobile is 07967053089 and my email is

I have learnt so much

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