Sophie-May Designs is named after the daughter my husband and I lost in 2016 when I was five months pregnant. This is the story of my pregnancy with Sophie and the devastating loss that we suffered. Infant loss is not spoken about enough and although there is some amazing help out there, more still needs to be done to help, not just the mothers, but the father’s also.
I first found out I was pregnant with Sophie the day after my birthday on 17th August 2016. When I was around nine weeks of pregnancy, I had intense cramping in my lower right abdomen, after a visit to the hospital it was apparent that the pain was caused by an ovarian cyst. Thankfully this hadn’t affected Sophie and the pregnancy, however, little did we know that was just the beginning of the worst twelve weeks of our lives.
During the routine twelve week scan the sonographer (coincidentally also called Sophie) found the most minute abnormality; not all the of Sophie’s bowels had entered into her body as it should have in her early development. A few days later, after a very anxious weekend, we met a specialist doctor who confirmed that Sophie had a condition called gastroschisis. We were told not worry as it is fairly common, with one in seven thousand babies having the condition and that Sophie had a 95% chance of survival. An early delivery date was set for 36 weeks at Bristol’s children’s hospital and regular ultrasounds planned.
I attended the sixteen week scan alone as we didn’t feel there was any need for concern. The scan showed that the bowel was no longer outside of Sophie’s body and the doctor believed that it had most likely gone inside her like it should have and to plan for a natural delivery. The relief and elation that I felt was enormous, I was so relieved that my baby who I loved unconditionally was healthy and was going to be OK. I spent the rest of the day looking forward to the future with her in our lives.
The following morning my elation was shattered when the specialist doctor rang me to tell me that after consulting with colleges, she believed that she was wrong, the bowel had most likely fallen off and we should consider ending the pregnancy. The only way to know for sure one way or another was to wait four weeks and have another scan at twenty weeks and to see if the bowel was dilated.
Those four weeks were, at that point, the hardest we had ever lived through. We continued our daily routines, hubby going to work each day and me working in a school as a higher level teaching assistant. I tried to remain as positive as I could during those weeks, I focused on my job as much as I could and stayed strong for my nine year old son. We were living in hope that the doctors were wrong and she would be the first case ever where the bowel had gone into her body like it should have. I kept hoping that my pregnancy dates were wrong and the scan was one week too early or they had simply misinterpreted the initial scan.
Shortly after the sixteen week scan, I first felt her move inside me for the first time. I was laying in bed about to go to sleep and I felt a sudden flurry of butterflies low down in my abdomen, never before, or since, have I had that feeling. When I close my eyes I can remember it so vividly. As the days went on I started feeling little kicks, only once or twice a day. This gave me hope. Sophie was strong, she was a fighter, therefore she would survive this, she would beat the odds that were stacked against her.
At twenty weeks we took ourselves back to the maternity ward at the hospital knowing that the results of this scan would determine the rest of our lives one way or another. Devastatingly, the scan confirmed our worst nightmare. Sophie’s bowel was dilated indicating that her bowel was damaged. Maybe I should have given up hope there and then but I just couldn’t, I had to fight for my little girl’s life and give her every opportunity that I could. The doctor arranged for us to meet a surgeon in Bristol who specialised in children and babies with bowel irregularities. Two weeks later we received an appointment.
The Saturday before our Bristol appointment (which was on the Monday), my husband started vomiting, he could hardy move and when he did move, he vomited. Convinced it was just a 24hour tummy bug we weren’t too worried. But by Monday he was still vomiting and we were becoming increasing concerned. The doctors at the walk-in centre confirmed that he has labyrinthitis, an inner ear infection that causes dizziness and vomiting. Realising that my husband would not be able to come to the hospital with me, my mum and I made the sombre journey together.
The specialist surgeon confirmed our worst fears, there was nothing they could do. Every part of Sophie was perfect, from the top of her head to the tips of her toes, just perfect, apart from her bowels. Too much damaged had already occurred and she had already beaten the odds of surviving this long. Even if she had made it full-term, the chances of any survival were minimal and she would have been in immense pain.
The decision was made and I was booked in to give birth on Thursday 15th December, six days before my son’s tenth birthday. After a twelve hour labour and my husband still suffering with labyrinthitis in the chair next to me our beautiful baby girl was born. I held her in my arms and just looked at how perfect she was, there was no sign of any problems in her perfect belly where the bowel had once been.
Nothing in this world can prepare you for a moment like that. The midwives were utterly amazing and I thank each and every one of them who supported my husband and myself in our darkest hours.
The following day I came home in a taxi, alone. My son had finished school for the Christmas holidays and I tried to stay strong and happy for him. He didn’t fully understand what had happened and nor should he, I did not want to take his happiness away from him. We struggled through Christmas, hubby still with his labyrinthitis and grief, me still numb and in disbelief of what we had just been through.
On the 10th January we buried Sophie at a the grave yard in Exeter. She lays in a graveyard with too many babies and children who have lost their lives far too young. The unmarked graves always hit me the hardest and each time we go. My heart bleeds for the little children under them, hopefully loved and not forgotten, just too painful for their parents to visit.
I received counselling from the hospital which helped at the time and the charity SANDs (Stillbirth and Neonatal Death Charity) gave us a memory box. Sophie was buried with a teddy bear (we have the matching bear), a letter that I wrote to her in my most grief stricken hours and a cushion with lavender extract so whenever I smell lavender I can feel close to her. Nothing in this world can make the pain any less but the thoughtfulness that had gone into the memory box made it slightly more bearable. That is why, whenever anyone buys a piece of memorial jewellery from my company Sophie-May Designs, I give a donation to SANDs so that they can continue their amazing work of helping the families who are unfortunately suffering the unbareable loss of a child.