40 years of volunteering with Bliss – June’s story

I first read about this brand-new, grass-roots led charity Baby Life Support Systems (Bliss) in the Daily Telegraph in 1979.

At the time there were no other neonatal charities and what stood out for me was that the parents who had set up the charity were being advised by Professor Osmond Reynolds. Professor Reynolds, a pioneer in neonatology, had cared for my daughter Emma when she was born at 32 weeks at University College Hospital in London.

Emma was my second premature baby. My son Nick had been born at 36 weeks at a hospital in Cambridgeshire because of Rhesus Incompatibility – a condition which develops when a woman has Rh-negative blood and her baby has Rh-positive blood. This meant that my body reacted to the baby's blood as a foreign substance, causing complications in both pregnancies and meaning both Nick and Emma had to be delivered early to save their lives.

My experience at the hospital where I delivered Nick was not a good one. I wasn’t allowed to go to visit him at first. The day after his birth, I went to the neonatal unit on my own and passed through rows of incubators. I eventually found a nurse and asked where my baby was and realised that I’d walked right past him, I still get upset when I think about this today. I found the staff to be unwelcoming and I was not kept informed about his condition in between visits.

In 1972, women had to stay in the hospital for a week after giving birth but because I was not able to care for my son and was worried about him I felt very unhappy. I asked to be discharged because my eldest daughter who was only 19 months old was showing signs of distress at being separated from me, although she was being looked after very well by my husband and my mother. The hospital refused. Fortunately my son was discharged with me after one week but had regular checks back at the hospital.

When I was 23 weeks pregnant with Emma in May 1979, I was referred to University College Hospital so that she could have intra-uterine blood transfusions which would help protect her from the antibodies that my body had developed because of the Rhesus Incompatibility. These procedures took a long time to do and it is a worrying time but the baby was monitored closely throughout to ensure they are not becoming distressed. Emma had three transfusions before birth but unfortunately my placenta began to breakdown so I was admitted to UCH and stayed there until the decision was made to deliver her by c-section at 32 weeks.

The neonatal unit, led by Professor Reynolds, was extremely forward thinking and run in a very similar way to the units babies are on today. Rather than making me feel unwelcome, the medical team encouraged me to visit Emma on the neonatal unit as soon and as often as I could. The treatment I received meant that I felt much more empowered as a parent and was a stark contrast to how I’d been made to feel when I had my son.

After a blockage in Emma’s intestine was resolved and she had her blood changed, she progressed well but it was hard leaving her in London when I was discharged. She was transferred to the hospital in Cambridge when she was four weeks old and then came home which was a relief for my husband and my two older children who were eight and six as it had been a difficult time for them too.

The experience of having a baby born needing specialist care never leaves you so, when I opened my copy of the Daily Telegraph three months later and read about the group of parents setting up a charity with the help of Professor Reynolds to help save more babies lives across the country, I knew I had to get involved.

At first, I was primarily involved in fundraising. I had an article published in a local newspaper, got a group of young mums together and we would sell second-hand baby clothes, run coffee mornings and do sponsored walks. In the early years, Bliss focused on equipment donations because neonatal units were so badly funded they were completely underequipped to deal with the smallest babies. My own experiences inspired me to raise as much as I possibly could – I wanted to help ensure more babies had access to the life-saving equipment that my own had.

After my husband passed away in 2003, I decided to get involved in the parent support side of Bliss’ work. Currently, I am a Bliss Champion on the neonatal unit at Bedford Hospital and go to the unit every Friday to help support the parents there. I am always in awe of the parents I meet – some of whom have gone through experiences which are much more difficult than my own were. I hope that, in some small way, talking to me helps. There are some parents who have more than one premature baby and when I see them on the neonatal unit again it is always very touching when they remember me. I hope this means that Bliss and I have made their experience a little easier.

I have supported Bliss for 40 years now and the charity is still very necessary. Although much of the face of neonatal care has changed in that time, the work Bliss continues to do around training healthcare professionals, research, providing emotional support and campaigning on issues is still relevant and vital to ensuring that the future of neonatal care is properly funded and of the highest possible standard.

I am incredibly grateful and proud to have been a part of this charity for so long and have watched it evolve from something that was run from parents’ kitchens and front rooms to the national charity it is today. I hope that the future remains bright for Bliss – and babies everywhere. Here’s to the next 40 years!