The charity we never knew existed

We found out Ewan had died before he was born. His heart stopped beating when I was 32 weeks pregnant. We were in hospital at the time and after the ultrasound, we were taken to their Serenity Suite for an explanation on what would happen next. It was at this point we were given a leaflet by one of the midwives ‘When a baby dies before labour begins’. It had been written and published by a charity called Sands – the Stillbirth and Neonatal Death Society. This was the first time I had ever heard of them. I was still reeling from the fact that I thought stillbirth ended in the 1920’s. Yet here we were in the 21st century, discovering otherwise. And not only that but a charity dedicated to stillbirth research, supporting families and training professionals. The booklet helped to prepare us for what was to come. The birth, creating memories and keepsakes, the funeral, post-mortems. Things that clearly we didn’t have a clue about.

Sands logo

We elected to go home instead of staying in hospital for the next 48 hours. That night in between speaking to friends and family, I read the booklet from cover to cover. Although we had been given some of the information in hospital, we had been too dazed and in shock to take it all in. Afterwards I went on the Sands website and when in the early hours sleep deserted me, I read virtually every single webpage. There was a section called ‘My Story’ in which bereaved parents and family had written about their personal experiences. I think I looked at all of them. I needed to find out what they had been through. How had their babies died? It was as though I could gain some comfort in knowing other people had a similar experience to us. It helped to know that we weren’t alone. With each story I cried fresh tears, joining in their grief along with my own.

Reading the website I realised that whilst stillbirth is not common, it isn’t as rare as you may think. There are more instances of stillbirth than SIDS (Sudden Infant Death Syndrome) or cot death as it used to be known. In the year Ewan was born (2011) there were 3,811 stillbirths compared with 723,913 live births. In the same year there were 244 unexplained infant deaths (this includes sudden infant death). All statistics are from the Office for National Statistics website.

In the days after Ewan’s birth, we had to plan his funeral. We kept it a very small affair with immediate family and a couple of close friends. Someone rang and asked if we wanted flowers or money donating to a charity. Before then I hadn’t really attended a lot of funerals, so wasn’t familiar with the practise of donating money. It seemed fitting to choose Sands as a charity and so set up a Justgiving page in memory of Ewan. We told our friend and then decided to message the link to a few people, just so they didn’t feel as though they needed to ring with the same question (we quickly realised how some people found it difficult to make initial contact with us). I still have a copy of the email I sent the day after Ewan was born:

In Memory of Ewan

Hi everyone  

I’m more or less 100% sure that you are all aware of our recent news. If not then the link below will explain everything further.   We have had lots of extremely kind words, cards, text messages, emails and phone calls. We have also received a lot of flowers which have been a comfort to us both, brighten up our home and look beautiful. However we are starting to run out of space! A few people have asked whether we would like flowers at the funeral or a donation to charity. As such this has prompted us to set up a Justgiving memorial page in Ewan’s memory. We have chosen the charity SANDS (the stillbirth and neonatal death charity) – the information on their website, leaflets from the hospital and hospital facilities have already helped us enormously. If you would like to visit the page and/or donate then that would please us both tremendously however there is no pressure if you don’t.

 

We set up a system with Justgiving that I received an email every time a donation was made. Within an hour the first email came, then another, and another and so on. We were completely taken aback with how quickly our friends, family and work colleagues responded and also how generously. The page suddenly became a tiny ray of hope and joy to us. We got more excited with each donation and each landmark – £500, £1000. The amount kept rising! We said to ourselves ‘Look at our clever boy. He’s raised so much money’. It cheered us that something positive was coming out of a negative.

Justgiving (2)

To date the total on the page stands at £7111 plus gift aid of £679. This includes money from a quiz we held a few months later, donations from guests at a friend’s wedding (instead of gifts) and a friend’s baby sweepstake! We are so immensely proud of our son for raising this money and never dreamed it would be so high. We would have been happy with £500.

Talking to a friend last night, she asked if we were still raising money for Sands. When I thought about it, I realised it was quite some time since our last fundraising venture – we both took part in a local 10k run two years ago and raised over £400. Although recently Dylan’s nursery had a fun day and half the money raised was donated to Sands. Adam has also just started a monthly donation and I have recently booked another quiz night for October. But it made me think how I would like to use this blog to help further raise awareness of stillbirth and the work of Sands, along with other stillbirth and baby loss charities. If just one donation is made as a result of this blog post, I will be over the moon.

Sands 10k

The understanding and help we gained from Sands was invaluable and if we can help to raise money to support others, again this would be a great comfort to us. And of course, be ever more proud of our beautiful Angel.

 

 

6 responses to “The charity we never knew existed

  1. Kathleen Smith

    Soo beautiful Rachel, you make me feel so proud xx

  2. Thanks, although you may be a tad biased …. mum! xx

  3. Can I be proud of you too? Can friends be proud of each other?
    Can I also be proud of your Mum being proud of you?!?
    Loving your work Rach!!

  4. Sorry for your loss, I think Stillbirth is an unspoken subject. We were blissfully unaware of any dangers that can occur later on in pregnancies and when my wife reached 36 weeks we thought it was only a matter of time we would be bringing our baby home. However 2 days later we found out that our Son, Rory, had no heartbeat. My wife was then induced 2 days later and he was born on 30th May 2015. SANDs do an amazing job and have supported us and our famly. Like you I have started to blog about our experience to raise awareness of Stillbirth.

    • Thanks for your comments Ben and I am so sorry for the loss of your son Rory (beautiful name). I think unfortunately that the term ‘blissfully unaware’ is very true and applied to us as well. I don’t see any harm in writing about it, although obviously it has taken some time to be able to do it. If you send the link I would love to read your blog too. Love to you and your wife.