Why are we raising money for the Stillbirth and Neonatal Death Charity (SANDS)?

SANDS have helped us in so many ways and I am aware that those who are lucky enough to have not needed their support may not fully understand the breadth and depth of their work and why they are such a special charity.  In our last few days of Andy’s epic cycling challenge across the US, I wanted to take some time to say just why we are raising money for this amazing organisation.
So, what have SANDS done for us?

  1. They helped us to understand what had happened and how to make decisions about our baby

When we found out that Orla had died, the induction process was started and we were trapped in the labour ward for almost two days.  Induced labour can be long and painful – add to that knowing that the baby you are delivering will never even open their eyes and you can imagine that this time is excruciating in terms of emotional pain.  There is so much time to think that it can really push you to the edge.
During those initial hours, when the contractions were slowly building and I was able to talk, we were given a bereavement pack by our midwife who went through the information with us.  This gave us a wealth of information regarding what to expect and next steps following Orla’s birth.  At a time when you should be getting excited to meet your new baby and finding out their gender, whether they have hair and who they look like, imagine instead having to make the most difficult decisions of your life.  Without the information given to us by SANDS, I honestly don’t know how we would have coped:
How you might be expected to give birth to your baby:
Although we weren’t given a choice for delivery (something that seemed shocking at the time, but I now feel immensely proud to have given birth to Orla), this booklet helped us to understand what to expect and the choices that we did have. It had quotes from people who had been through the same difficult journey before and it was reassuring to know that they too had initially wanted a C-Section but felt glad to have gone through a natural labour.
How to say goodbye to your baby:
Imagine having to pack a lifetime of memories into just one day with your child – what would you do?  We had absolutely no clue, but SANDS were able to give us ideas and suggestions for what we might like to do to make our most treasured memories and keepsakes of Orla.  Dressing her, taking photos, getting hand and footprints, cutting a lock of her hair – all these things that when you are pregnant you take for granted are so incredibly important.  There will always be regrets and thoughts of ‘I wish we had…’.  But without the help of SANDS we would not have even half of our most deeply treasured possessions.
Deciding about a funeral:
We have been lucky enough to get to this point in our lives and not have to plan someone else’s funeral, so this was completely new and terrifyingly painful territory.  SANDS gave us information about how to plan a funeral when you should be having a baby shower; creative and appropriate ways to honour your baby that did not need to conform to what we might traditionally expect from an adult funeral.
Deciding about a post-mortem:
Probably one of the most painful decisions to make.  Whereas most people are making decisions about delayed cord clamping and the Vitamin K injection and we were having to decide whether or not we wanted to subject our tiny precious baby to a post-mortem – and if so, what kind.  Again, we have been so lucky to not ever have to make that decision before, but our eyes have been opened to the awful decision of whether to have a full post mortem with removal of organs, or a less invasive procedure that may not provide the same level of answers that you desperately hope for.  The SANDS booklet carefully and considerately helped us with this horrendous process.

  1. They let us know clearly (and sadly) that we are not alone

In the days after we lost Orla and we were back at home we felt desolate and alone.  I know very few people who have suffered a miscarriage, let alone the loss of a baby through term stillbirth, so this was a dark, lonely and deeply shameful place to be.  However, SANDS have a website that is full of stories shared by other people who have experienced the same, or similar.  And there are lots of them.  Andy and I literally gobbled up every single story in those initial days – reading many again and again and being comforted by the fact that we were not alone, that what we were thinking and feeling wasn’t abnormal.  And most significantly, that these other people survived; they were forever changed, but they lived to be able to tell their story and to help others.
SANDS also run a support phone line and email address that you can contact for immediate support and advice when you need it.  Having the option to email rather than call is great for those times when it is difficult to talk or speaking to someone just feels too much.  In the same way, their online forum means that you can connect with others who might be feeling the same as you in that moment.  Just having someone say ‘me too’ can be enough.  In addition, SANDS also run a support group near to where we live, and although we have yet to attend, knowing that we can meet real people face to face who have suffered the same is so reassuring.
Andy and I honestly believe that it is these things that saved up from the deepest darkest hole in that first week.

  1. They have helped our family and friends

SANDS have many resources that can help family and friends to understand their own thoughts and feelings regarding the loss of a baby.  I found myself overwhelmed with guilt and sadness for what I felt I was putting others through; yet I didn’t have the capacity or words to be able to do anything about it.  I was so completely decimated by my own grief that getting out of bed was one of the hardest things to do.   I literally had nothing left to give anyone else.
SANDS offer written material specifically aimed towards family and friends, but their support lines and groups are open to anyone who has been affected by the loss of a baby.  We know that the ripples of losing Orla reach far and wide and to know that there is someone else who can support others through this helps to relieve the stress and burden somewhat from our shoulders.

  1. They have supported us in planning for the future

For me, I know that my future is completely different now.  I am a changed person and how I approach even normal daily activities has altered.  However, the big life events such as returning to work or trying again for another baby can feel overwhelming.  I know that SANDS will be there to support us through these challenges with written information, their website and specific support groups.  Knowing that I can send a SANDS booklet to my employer that will help explain some of the difficulties I am likely to face when I return is invaluable.

  1. They give much needed hope for us and for others

SANDS campaign to raise awareness and to fund vital research into understanding and helping to prevent stillbirth.  We have no answer as to why Orla died – she was perfect in every way and there was no found reason as to why she died.  Incredibly, this is the case for around two thirds of term stillbirths.  I truly believe that there was a reason, but sadly medical science has yet to become advanced in this area in order to understand.  In much the same way that cancer was not understood just a few years ago, now more people survive than die.  I hope that one day we will be able to say the same for advances in stillbirths, but the only way this will happen is with research.  But research costs money, and sadly money that is not funded by the government.  Therefore, knowing that SANDS campaigns and fundraises to undertake vital research gives me hope that one day we might be able to know a possible reason why Orla died.  And this will undoubtedly save thousands of other families from enduring the pain that we live daily.
So for all of these reasons, we are currently fundraising for SANDS.  They are more than just a source of reassurance – they have given us advice, support, guidance and hope, and for all of these things we will be eternally grateful.  SANDS rely on the support of their many fundraisers in order to survive.  They are a small charity and every single penny will help with providing something direct to parents like us.  So please consider helping us to help them so that in the future there are less families suffering as we are.  Remember that every single day 15 more families will start their journey of grief after losing their much loved and wanted child – please help us to reduce this number.
Michelle, Andy and Orla x

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