My Fundraising in Memory of Grace Emily Wilson born asleep 04/05/2000

Our story begins in Pattaya, Thailand where we had recently relocated with Mark’s job when I discovered I was pregnant with our third child. It’s fair to say that I was terrified at this news to begin with as I was pretty much alone in a foreign country with two small boys, Matt aged 3 years and Josh aged 9 months, Mark working long hours and no extended family to reach out to for support. I could only imagine how difficult this was going to be for me. However, after a visit home to see my Mum and a few weeks to come to terms with things I sorted out a Nanny to take some of the burden and started to look forward to meeting our new arrival. When I visited the hospital at 15 weeks for the Triple Test and dating scan, I was delighted to learn that all was well with our new bundle and that we were expecting another BOY. 

Having fallen in love with our expected new addition, I spent the next few weeks starting to buy everything we would need on many trips to Pattaya and Bangkok. At 21 weeks I returned to the hospital to get my test results. I had no concerns until I was kept waiting for two hours. This was unusual as ex-pat patients were always seen first. Eventually I was approached by a British midwife who advised that the Consultant had only just viewed my results and that my baby was ‘high risk’ for Downs Syndrome at 1:250. I was offered an amniocentesis at the IVF clinic in Bangkok but decided against it as Matt had also been high risk at 1:200 and after the amnio I had worried about miscarriage until he was born. I was eventually seen by the Consultant to discuss matters further and it was at this point that I noticed a high-lighted result on the paper but as she was ignoring it, I assumed it was nothing to worry about. How wrong could I be?  

I left the hospital feeling happy and looking forward to my new baby BOY. This was to change dramatically in a phone call from the Consultant only one hour later. She had spoken with the IVF Consultant in Bangkok who had advised her that the high-lighted result was extremely serious and required immediate investigation. The result read T18 1:3. I returned to the hospital to be shown photos in a medical book of babies born with T18 by a Consultant with no knowledge of the condition. I was frozen in horror and knew that at that point in time my life was to change irreversibly. On returning home I called a trusted Midwife at my former NHS employer to ask her more about T18 but the more she told me the worse I felt. She referred me to the website of an organisation who gave advice on antenatal results and choices, and I was crushed to read the words ‘if your baby has this condition, it will not survive’. How could my precious baby, who we planned to call Lewis, not be given the chance to live the life he deserved. 

Two days later after many tears and very little sleep we headed to Bangkok to the IVF clinic for more tests. I was clutching at straws and praying that a 1:3 result still gave my baby a 2:3 chance of being born free of T18. The first sentence spoken by the Consultant crushed even that tiny spark of hope. The highest risk he had seen for T18 before this was 1:10 and that baby had it so he was certain that our baby would too. My heart was shattered and for the first time Mark, who until then had an ‘everything will be fine’ attitude, finally had to accept what was becoming the inevitability of our situation. After a detailed coloured scan watching our baby move on screen and an amniocentesis to confirm the results, the Consultant listed the ‘defects’ he had identified in our baby which all pointed to a diagnosis of T18. Low set ears, tiny pelvis, clenched fists, hole in the heart, hernia and rocker bottom feet. My head knew I had to accept what the future was going to hold but my heart desperately wanted to find a way for my SON to have the life he so deserved. 

The next 10 days passed in a blur as we waited for the amnio results to come in. Mark’s Mum flew out to Thailand to help with Matt and Josh and provide some much-needed family support to us all. On the day the results came in I took a call from the Consultant who told me, in the most direct way imaginable, that my baby had Full T18 and invited me to the hospital to discuss ‘my options’.  Two hours later sitting opposite the Consultant I heard for the first time the two phrases that I truly believe ought to be eradicated from childbirth terminology: my baby was ‘not compatible with life’ and I should undergo a ‘therapeutic abortion’. I could barely comprehend what I was hearing but that my devastation was to intensify when I read the upside-down results in front of me: 47XX+18. My baby had T18 for sure but not the baby boy we had named Lewis, I was expecting a GIRL. When I asked the Consultant to clarify this, she confirmed it with a big smile on her face in a tone that almost said congratulations. She then suggested that I should abort my baby that day. I had no strength left in my body or mind, but I knew I had to keep my baby inside of me until I could get her safely back to the UK for a second opinion and more information on the choices available. 

We flew home as a family two weeks later and after seeing a GP and being assessed by a Community Midwife at 28 weeks gestation I found myself once again sat in front of a Consultant, this time in Foetal Medicine, discussing the fate of our unborn baby girl, who we had named Grace Emily, and with her the fate of a huge part of my heart. Another scan had discovered she was also missing the base of her brain so without my body for life support she could not survive. The Consultant was uncomfortable with my decision not to allow him to stop her heart with an injection prior to him inducing her birth but, after everything I had endured to get her to this point, I desperately wanted to have the chance to hold my baby girl and see her open her beautiful eyes so that when she grew her wings she would do so knowing how much her Mummy loved her.  

On the day my precious girl was to be born in to and sadly leave this world I was admitted to a home from home room at Newcastle RVI Hospital, joined by Mark, my Mum and Mark’s Mum. It had been agreed that if Grace was born alive, she would be left with me for the first ten minutes. If after ten minutes she was still breathing she would be given a painkilling injection, then left with me for a further two hours. Only after two hours would a full team be ready to intervene and give her life support. Sadly, none of these plans were needed as, at 10.50pm on Friday 4th May 2000, Grace Emily Wilson was born asleep, weighing less than 2lbs and badly bruised after my stomach had gone in to a tight contraction for three hours before she was born. The wonderful Midwife who had been at my side all day and night confirmed her stillbirth to us but still handed my precious bundle to me. To this day I can still feel her warm tiny body against mine and will hold on to that feeling forever. After weighing and measuring my beautiful girl the Midwife dressed her carefully in a tiny outfit after taking ink impressions of her hands and feet for a keepsake and handed her to my Mum for Nana cuddles. We spent the evening holding, kissing and talking to our precious baby girl and the Midwife took many photos as memories of our short time together. 

Grace stayed with me safely in my arms in a tiny bassinet throughout the night. I took in every minute detail of her beautiful face and fascinated at how much she looked like her brother Matt with her thick set brow and wispy black hair. By 6am I felt the time was right to say my goodbyes to my precious bundle and I handed her to a Midwife with one final kiss. Before leaving the hospital, I was visited by the Bereavement Officer, Julie Bailey, who became a firm friend at a time when I really needed someone to help me through the dark days ahead. It was Julie who made sure my baby girl existed by registering her, not as a ‘therapeutic abortion’ but as a stillbirth, meaning I have a Stillbirth Certificate acknowledging legally that my angel touched this world in a brief but special way. Julie also looked up organisations that could provide much needed support and along with SANDS she introduced me to a support organisation that has remained a part of my life to this day. Julie introduced me to SOFT UK. 

After two days out of hospital and away from my baby girl I knew I had to see her again. I was completely broken and the GP felt it was important I go back to see Grace one last time. Julie Bailey organised my visit and I returned to the room where Grace had been born. The Midwife who delivered her brought her back in the tiny bassinet but when I looked at her, I felt complete horror as she looked different. I remember screaming that it wasn’t my baby and crying hysterically. The Midwife very calmly rearranged how Grace was lying and handed her to me again explaining that it was my baby girl but with no muscle tone she just needed more support. As I calmed down, I took in her tiny face and as my tears fell, I began a two-hour conversation with my beautiful girl. I told her all about her brothers, her Daddy, her Nanas and Grandads, Uncles, Aunties and Cousins. I described our house in Thailand and the life she should have had. I promised her she would always be a part of our lives and that we would love her endlessly forever. I kissed every part of her and took in her smell. I held her hands and imagined how beautiful her eyes would be and how sweet it would have been to hear her cry. This time when I let her go, I knew it was the right time and I was doing it having made precious memories to last a lifetime. 

On 12th May Grace was buried in Hebburn Cemetery with her Great Great Grandparents and soon after a Teddy Bear headstone was erected in memory of our beautiful girl born asleep. Soon after the funeral I returned to Thailand but couldn’t settle and quickly realised that I needed to be near my angel. As a family we returned to the UK in July 2000 eventually setting up home in Scunthorpe, only a 2-hour drive from Grace’s final resting place. 

On our return to the UK, I contacted SOFT UK for the first time and spoke at length to a lovely lady called Christine Rose about my feelings of guilt, the intense emptiness, the endless question of why me and my inability to even begin to accept our loss. She listened without comment or judgment to my guilt, anger and intense sadness and slowly helped me make sense of my world once again. She helped me find a way to move forward with my grief and one year later I welcomed into the world my first rainbow baby, the baby boy we had expected the year before, Lewis joined our family. He couldn’t have looked more different to Grace with his blonde locks, and he certainly made life interesting with his cheeky personality. Out of all her siblings, Lewis is the one with the closest bond to our angel. It’s almost as if she sent him to us with a part of her inside him. Five years later we were blessed with a second rainbow child. Libby is as different again to the others with her beautiful red hair and quirky personality. Her love of Musical Theatre certainly keeps me busy. 

Over the years I looked forward to receiving the SOFT UK Newsletter every month. I read with sadness the stories of all the other families grieving the loss of their much wanted and loved angel babies and with inspiration the stories of those families learning to live with their awesome T18 and T13 warriors. I knew in the background that SOFT UK was also a huge support to all these families too so decided very early on that we as a family would do our best to pay back the support the amazing people at SOFT were giving to us.  

Our first fundraising venture was to be undertaken by Mark and his workmates who trained for and took on the Three Peaks 24 Hour Challenge. This involved them climbing Ben Nevis then Scafell Pike then Snowdon within a 24-hour period. The challenge was completed with the help of both of Grace’s Grandads as drivers and my Dad even took on Snowdon at the end, in her memory.  

The next family member to fundraise was my Mum who gave all donations in lieu of gifts at her wedding to Harry to SOFT. Libby and I were bridesmaids and when they were signing the register a small white feather fluttered down. I guess Grace was making her presence known that day. 

Grace’s eldest brother Matthew was next to take on the fundraising gauntlet. He nominated SOFT UK as the charity when taking part in the National Citizenship Service awards. He and a group of friends took on open water swimming, hiking and cycling with Paralympians in Scotland before returning to Stafford to organise their fundraising event. They raised money at a cake sale in the local market followed by a disco and awards ceremony the same evening. I was so proud of Matthew for all his hard work and determination in memory of his sister. 

Up to this point I hadn’t been directly involved in any fundraising myself but that was to change when I challenged my friend to take on Couch to 5K with me. It was not going to be easy as at the age of 49 I had never been a runner. But with determination I completed the eight weeks and soon after joined Beaconside Runners, a beginner’s running group. With two incredibly inspiring coaches and some fabulous running buddies I was soon running 10k, completing my first organised run in June 2019, and had a place to run the Great North Run in September 2019. This was the start of my own fundraising journey. Although I was running on a charity place, as soon as I reached my target, I switched my donations to Wonderful.org and started raising money for SOFT. Within days of me completing the Great North Run I found out I had a public place in the London Landmarks Half Marathon. I ordered my SOFT UK running vest and started planning every way to raise as much money as I could. The main event was an Afternoon Tea with musical theatre entertainment provided by Libby and her super talented friends. It was a huge success raising over £700 only days before Covid changed our world. Unfortunately, London Landmarks was postponed due to lockdown but as part of my daily exercise I took on the Local Landmarks Half Marathon challenge to claim my medal and justify my fundraising. 

The next year was a difficult one for fundraising but we did our best keeping SOFT UK in our hearts by taking part in ‘Sing for SOFT’, putting together a fabulous online mini concert featuring Libby and her theatre friends and manged to raise £100. In addition, I started to make small items such as cushion covers, carrier bag holders, and peg bags using my Facebook page LibbyGrace Crafts to advertise them, with all proceeds going to SOFT. I also set up a Facebook birthday fundraiser and was astonished to raise £230.  

Sadly, my Mums husband passed away in October last year and as requested by him the donations in lieu of flowers were shared between his hospice and SOFT UK.  

As the world started to open again the delayed London Landmarks was rescheduled for August 2021. I kickstarted my fundraising with a 24-hour run/ walk challenge. This involved me selling 30-minute slots over a 24-hour period to friends and family for a donation of their choice to SOFT UK. They then ran or walked their slot and sent me photographic evidence. I completed 10 hours myself including a 10k run, a half marathon and a three-hour dog walk. Most impressively were the slots taken between midnight and 5am by my son’s friend and some running buddies. Everybody knows how much SOFT means to me and so many people wanted to be involved in the event that I had some slots covered several times.  

The run itself was on a hot humid day in August and was by no means easy. Thinking about Grace and all the other SOFT families and the reason I was doing it kept me going and got me across the line, although it was certainly a very emotional day. Before, during and after the race, my Virgin Giving page sent me a message each time I was sponsored. I was truly humbled by the support that day from all my friends and family, especially Libby and my brother who cheered me on along the route. 

Next was the Great North Run again and two weeks later the Stafford Half Marathon where I was joined on the start line by Grace’s brother Josh and his team mates from Stafford Town FC, all raising money for SOFT UK. To say I felt proud of them all is an understatement. Another unexpectedly hot day with very little water enroute made for a very difficult run but once again Grace’s memory and the incredible support from friends and family got me across the line.  

As a culmination of my fundraising that year I hosted an 80s Fancy Dress Charity Disco on 23rd October. Over 90 people bought tickets and several friends and extremely generous local businesses donated raffle and auction prizes, not forgetting fantastic merchandise direct from 80’s artists Siouxie and the Banshees and Erasure. It was an awesome night. All of Grace’s family were there and I couldn’t have been prouder of them all.  

Since then, I have gone on to complete two more London Landmarks, a Great North Run and most importantly the Royal Parks Half Marathon when I ran for the first time on an official Soft UK place as well as two more Afternoon Tea events and a second 24-hour challenge.  

Matthew, Joshua, Lewis and Libby you are my world and Grace is your guardian angel. You ask why I fundraise... that is your answer. I class myself as so incredibly lucky to have four perfect, healthy children despite my grief at the loss of Grace 23 years ago, and I want to do all I can to support anybody else on that journey who needs it, both now and in the future. 

Sue Wilson