Talking About Baby Loss Awareness Week

Talking About Baby Loss Awareness Week

9th-15th October 2016 is Baby Loss Awareness Week — probably because it is an extremely tough subject to talk about and there still remains a certain element of taboo. That said, it is an important issue that must be addressed — in the UK, over 5,500 babies die just before, during or soon after birth each year. That’s over 100 babies every week and the UK’s stillbirth rate is one of the highest in the developed world. The public still remain largely unaware of these statistics and it is the job of the Sands charity (Stillbirth and neonatal death charity) to help raise awareness, provide support to parents and fund research.

Harry’s Helping…

One couple who have suffered the cruel and tragic misfortune of stillbirth is Wirral’s Julie and Clarke Pinnington. Their baby boy, Harry Clarke Pinnington, was born asleep on 4th July 2016 and since this heartbreaking loss, the couple have set about raising money for Sands and the Arrowe Park hospital bereavement suite. Harry’s Helping Sands is raising money primarily via 203 miles worth of marathons — one mile for every day of his life — featuring 12 half marathons, a 20 miler and the Liverpool marathon at the end of May 2017, with the assistance of friends and supporters. In addition to this, there are other fundraising events in the pipeline such as a charity bingo night in Thornton, Liverpool, on 24th October, a team walk up Snowdon and various other things.

Julie talked to Urbanista about the difficult situation her and Clarke went through: “We were very much looking forward to becoming new parents and the arrival of our baby boy in September this year. Like all parents we had been busy organising the house, redecorating, doing up the nursery and planning ahead for our new little arrival. The pregnancy had been going really well and we were classed as low risk so we weren’t particularly worried or prepared for what was to happen. We noticed Harry had been a little quieter on the Friday night — I felt him move and roll and went to bed not worrying too much as we had an appointment the following morning.

When we got to the hospital we went through our history since the last appointment and I mentioned that all was ok except that he seemed a little quieter than normal last night but I had felt him move. The midwife searched for a heartbeat but was only picking my own heartbeat. A second machine was used to see if Harry’s heartbeat could be found but again nothing. The midwife at this point reassured us and said not to worry too much and a scan will be needed to check all is ok. Whilst we waited for a doctor to arrive to perform our scan, we waited in a separate room with its own private seating area. The doctor arrived and started to perform the scan. I knew instantly that there was no heartbeat. I kept hoping that I would see the little flicker of movement on the scan but nothing. The feeling of absolute devastation overcame me and we both just tried our best to console each other. The next bit is all very much a blur — I remember another consultant coming in to confirm Harry had passed away and that he could see no obvious signs on the scan as to why.

We were then told our next steps, that I would have to give birth to Harry naturally within the next day or two. From that moment on my Clarke’s main concern was for my own health so we decided to take the offer of staying in the hospital bereavement suite until the labour started. We went back home to pack our bags, of which I had nothing prepared — I had no idea what I was suppose to take. I hadn’t got that far in my preparations for Harry’s arrival — it was too soon to be thinking about! I managed to get all I needed with the help from my lovely friend Jane who was amazingly strong on hearing this news, she rushed around picking up all the things I needed for my hospital bag. When we finally packed all our things, I felt like I wanted to stay at home rather than go back to the hospital. I agreed with Clarke, that any signs of labour I would go straight back. So we waited and waited the next day (Sunday) came and went in a blur — to be honest I don’t think I can even tell you what I did on that day! By Monday morning we were asked to come back to the hospital so that they could bring on the labour.

I do remember the drive to the hospital that morning — I remember thinking, ‘The next time I will be in this car, I will be going home without my little boy, going home babyless’. The support and care we received when we arrived at the hospital was outstanding. We were well looked after and we could not have asked for a better midwife to deliver our baby Harry. Harry was born asleep on Monday 4th July at 18.17 weighing 2lb 4.5oz — he was perfect in every way, perfect weight for his gestation (29weeks/ 7 months and 1 week) and the perfect size, just perfect. This is what makes it difficult to understand. There were no obvious signs to why our little boy should not have made it. We spent the next evening and day holding him and trying to treasure every minute with him as we knew that it would be time to say goodbye the following day.

We held him, sang to him and read stories to him — all the things we wish we could still do now. We were given a memory keepsake box donated by the 4louis charity, who created their charity after the loss of their precious little boy. We had hand and footprints taken, a cutting of his gorgeous and plentiful black hair and photographs were taken by Kim (from Remember My Baby). I do remember thinking if we really wanted these photographs taken but we are so glad we did. They are beautiful and are such a big part of our memories of Harry. And then it was time to say goodbye. I remember it very clearly — it was nearly 4pm and we both held him, kissed him and said how much we loved him. It was incredibly tough but we knew we had to say goodbye. The next couple of days were really hard, trying to come to terms with losing Harry and also organising his funeral. We are doing the best we can to remain positive and remember Harry in a positive way (with all the fundraising) but there are still days where the reality of what has happened suddenly hits home.”

Julie then talked to us about Harry’s Helping Sands: “Since losing our little Harry we have learnt so much about stillbirths and neonatal deaths. We heard about Sands through Heather who is the bereavement midwife at Arrowe Park hospital. Sands is a charity which helps support bereaved parents and their families through the loss of their baby. They also support and help fund much needed research into stillbirths and neonatal deaths. The support and care we were given from the hospital during this incredibly difficult time was outstanding . We wanted to be able to give something back and show our appreciation and gratitude by supporting Sands and Arrowe Park with their vital work in supporting bereaved parents and their families. We heard that Arrowe Park were developing the bereavement suite we had stayed in so that parents and families who find themselves in this heartbreaking situation are able to give birth and build precious memories in a more comfortable environment.

We have learnt that awareness is majorly lacking in the UK and we want to help Sands increase this. We couldn’t believe how frequent this devastating experience happens so we started to think why if it happens to some many families? Why have we not heard that stillbirths or neonatal death can happen so easily? It is still very much a taboo subject, I guess no one wants to talk about baby deaths. We have found that people really don’t know what to say to bereaved parents — to the point where people would avoid us or not mention or acknowledge our recent devastation. They carry on as if nothing had happened (yet for 7 months it was the topic of conversations). Reflecting on this, we do understand that people do truly care but just simply do not know what to say or how to act. Before this happened to us I think back to how I might have acted and it is so very true that people fear upsetting bereaved parents but the truth is quite the opposite.

There is a taboo around stillbirth and neonatal deaths and we want to help break that taboo and silence by speaking out and raising awareness. The more people talk about it the more aware people are of this tragedy. We don’t want to scare people but we just want people (especially new mums) to be aware that this is something that can happen and be aware of what they can do to prevent this. For us fundraising is essential, but just as essential is the need to raise awareness — it’s about prevention for us. How can we prevent this happening to others? By making more expectant mothers aware of the need to monitor their baby movements (as this is usually the first sign of a problem) because we get caught up in the excitement of pregnancy and all the nice things which we plan and talk about, we rarely discuss the more negative sides and potential risks of pregnancy.

We do not know why Harry died yet — we are still waiting on post mortem results and, like a third of all parents of stillborns, we may never have an answer as a third of stillbirths are unexplained. That’s why vital research is needed to help find the answers . About a third of stillbirths and neonatal deaths are due to placenta problems — something which can be possibly picked up sooner through Doppler scanning. There are scans that can be given in the third trimester that can help highlight problems with the placenta. There is so much more research that needs to be done and many practices such as more awareness campaigns to monitor movement could help save more babies.”

Julie and Clarke, along with friends Jane and Michael, have completed three of the races so far in their challenge and Urbanista urges you to get involved in helping this very important fundraising mission. Please find details on how to donate and further information below: