Baby Loss Awareness Week – Jane’s Story

Hearing the worst

Hi my name is Jane and I am mummy to two beautiful boys, one who I get to take to school each day and one who lives in my heart. I would like to share my story for Baby Loss Awareness Week.

My first pregnancy was just the standard run of the mill pregnancy, until 20 weeks where we were sent away and asked to come back at 24 weeks for more scans. It was at 24 weeks where our little one was diagnosed with Hyperplastic Left Heart Syndrome. We were told the worst but hoped for the best. 

I blamed myself

It was at this diagnosis I first encountered SANDS (the still birth and neonatal death charity). I came home from this appointment in shock, disbelief…and many more emotions. My husband was researching cures, treatments etc. but myself, well I suppose you might say I was feeling very negative. 

Our much loved and much wanted baby was poorly, I still couldn’t understand all the whys and blamed myself so much. 

I found so much information on the SANDS website which helped me prepare for the worse, how I could preserve every memory, it was just how I was feeling at the time. 

There was nothing they could do

We went for more scans at 29 weeks to be told that our precious little one’s heart was so poorly, there wasn’t anything they could do for him. Their words were he had a “slim chance of survival if he makes it to full term”. We had an extra scan and found out our little one was a boy, a beautiful boy who we called William. 

We prepared for every eventuality

In those last 11 weeks of pregnancy we created many memories, swinging on a swing and just watching our little man kick and develop his own little personality. We prepared for every eventuality, special vests that fasten at the side which are useful for heart babies, looked around our local children’s hospital. We also got hand and footprint kits, 2 teddies and a few other things ready.  All which I had read about in the information provided by SANDS. 

the most precious 5 ¾ hours

At 40 weeks William was born.  He was very poorly but picked up and they scanned his heart. Sadly, there was nothing they were able to do so we spent the most precious 5 ¾ hours with him and close family until he passed away. We were lucky enough to stay overnight with him at the hospital using a cuddle cot.

When we returned home, we carried a memory box and a bereavement support folder from SANDS instead of a car seat into our home… these two items plus the photos we were able to take, are our most precious items we own. 

Finding support through SANDS

Not long after returning home I joined the SANDS online forum which was so helpful. I wanted to ‘talk’ with people who understood, but I wasn’t ready to see some one face to face. Through looking on Facebook I then found that our local area has a SANDS group that met once a month. It took 5 months but I gained the courage to attend. Just being able to say my babies name without the fear of upsetting someone, being able to cry, being with people who make you feel less alone have been invaluable. As the years have gone on and life has progressed, laughing, moaning and dealing with the anxiety surrounding my rainbow pregnancy, has all been the most helpful! Please don’t get me wrong family and friends have been amazing.  We were open about Williams condition from his diagnosis and our friends and family have been so supportive. Making friends at our group and our little rainbows growing up together is just so special.

I wanted to talk with people who understood

Keeping William’s memory alive

I have now been trained by SANDS to be a befriender so I can lead our local support group and answer messages and emails asking for support.  Everything I can do for SANDS is for William, keeping his memory alive. I wish we didn’t need our group, and each new person that walks in makes me so sad, but hopefully we can help them in some way. I have been able to do quite a few things for SANDS and our group now, one very special thing was telling Williams story to 3 groups of practitioners from our local hospitals, in the hope they may learn from the fantastic care we received.

Nationally SANDS has many local groups that offer support all over the country. There is a fantastic informative website, online forum, Facebook page and Facebook support group for people who have sadly suffered a loss. SANDS also funds research and is at the forefront of the National Bereavement Care Pathway which aims to improve bereavement care across the country. They also have a fantastic phone line and email support that will signpost you to your local group or will support you any way you can.

If you have got this far, thank you for reading William’s story. I will be lighting a candle for William, and anyone can join the Wave of Light in support BLAW2020 #waveoflight at 7pm on Thursday 15^th October.

Sending lots of love to all the families who have lost a little one.  I am 1 in 4, sadly not alone.

Thank you

Huge thanks to Jane for sharing her story with us for Baby Loss Awareness Week, and the important work of SANDS.

We will be joining the Wave of Light in Babipur Hangout on Thursday 15th at 7pm so please join us if you wish.

Useful resources:

SANDS https://www.sands.org.uk

Baby Loss Awareness Week https://babyloss-awareness.org

Tommy’s https://www.tommys.org