I recall the ante-natal classes back in late 2000 where we had a talk about giving birth. The midwife started to talk about using a hot water bottle and a couple of paracetamol for pain relief. All the dads relaxed and you could see them wondering what all the fuss was about. By the end of the talk the midwife discussed an emergency c-section with the operating theatre representing something out of a war zone. The colour drained from all. She told us the percent that end up in theatre and you could see us all look at each other working out statistically what 3 of us this would happen to. Well, I was one. In early 2001, following a 16 hour stage 2 labour including over 3 hours of pushing, 3 failed ventouse attempts and an epidural that had stopped working, Tom was delivered by emergency caesarean. He weighed 9lb 4 ½ oz. I always said it was that extra half an ounce that did it.
Unfortunately the difficult delivery meant that a few days later, Tom became a very deep shade of yellow as sever jaundice set in. His bilirubin levels were through the roof. He remembered the Winnie the Pooh that his grandad had brought him. At just after midnight he was whisked away from us as the UV lights in our room were having no impact at all. It was an awful few hours as I had no idea what was happening as naturally Tom was their priority. I called Simon, my husband, and explained that Tom was now in the NICU and was quite poorly. I will just say that he arrived very quickly to be at my side as I dare not consider the speed driven. The treatment plan was explained to us a few hours later and after a couple of days in the NICU and more days alongside me on the Levels, we were finally allowed home.
When Tom was nearly a year old I received a letter from SSNAP explaining how the charity works to support families and babies in the Unit. I had vaguely recalled a visit from someone (we had not slept so conversation on my part was very limited) and I remember us having use of a family room with tea and coffee readily available but that was all. The letter outlined different ways I could be involved: a donation, fundraise or become a volunteer. Now I know I am not a marathon runner but having been a teacher for a number of years I felt that listening was something I could do. So in February 2002 I shadowed a lovely lady called Catherine in the family room in the NICU. Twice a week a band of volunteers gave up their evenings to make themselves available to parents who were visiting their babies. We would offer a shoulder to cry on whilst forcing tea, coffee and biscuits onto them. Every story was unique. The only thing in common was that parents wanted to talk through their own journey. Of course, mist wanted assurances which was something we could not give them. But we could tell them where to get something to eat, where they could get further support, how to apply for financial support if required and also act as a go between with the medical team. What did become apparent though was that with the pressures of people working, we often were not getting to see parents as they were rushing in to visit their baby, then racing home to grab some sleep. Therefore we expanded our location and started to visit parents on the wards. Over time the nursing staff became more and more aware of what support we could offer as we could afford time to each parent. In late September 2006 I was visiting one parent. I was 30 weeks pregnant and she had just given birth to a 30 week baby. I recall looking at the photograph of her son, knowing that this was what my son would look like. Two weeks to the day I was in that exact room having unexpectedly gone into premature labour and after a full day at work, leading 2 meetings, driving home, collecting Tom from school and eating dinner, I had arrived at the JR and having been sent immediately to delivery had relatively quickly given birth to Alex.
Despite having been a volunteer for close to 5 years I still needed support myself. Familiarity can be a concern as you worry what else can happen. The phrase ‘ignorance is bliss’ sometimes is good. Alex spent 4 weeks in hospital, with the last 2 weeks being transferred to a smaller hospital.
I continued volunteering over the next few years and having experienced two children on the unit I became a voice for parents feeling that I could say what we needed. In 2009 I joined the board with a focus on parent support. At this time SSNAP was growing and we were able to employ staff full time as Family Support Workers (latterly Family Care Team). I felt it was important to be the advocate for the parents. Some decisions on how to spend valuable funds were made easier having experienced some of the challenges first hand. When both of my boys were in the NICU there was only one chair to sit on. You had to wait your turn. The same with breast pumps.
I continued to volunteer visiting parents until 2017 when I became Chair of the Board of Trustees. I hope I have never forgotten the core values of SSNAP ensuring the sick newborn and just as importantly their parents are sully supported. Volunteering comes in all shapes and sizes. It doesn’t have to be regular. Many of us rope our partners and friends in to support a variety of events. That may be baking cakes for family days, distributing T-shirts for fun runs or pouring the fizz at the end of marathons. There is always something for everyone.
Having volunteered for over 20 years I am so glad that I braved replying to the volunteer request. It was out of my comfort zone and it naturally brought back some emotions of what a challenging time it was. However, being able to know that my time means that our staff can focus on providing even greater support makes it all worth while.