I woke up one morning with a very heavy nauseous feeling in the pit of my stomach and knew I was pregnant. This was the start of an eight-month battle with hyperemesis gravidarum. Suffering from HG with the endless days of nausea, vomiting, weight loss, dehydration and hospital admissions can take you to some very dark places mentally, but it’s all worth it in the end though because you get to go home with a baby in your arms right?
At 17 weeks following a completely unrelated bleed we discovered our baby’s stomach and bowel were not where they were supposed to be. We were referred to a specialist hospital and it was confirmed that our baby girl had left-sided congenital diaphragmatic hernia (CDH) and had a 75% chance of survival. CDH is a hole in the diaphragm which then allows the organs from the abdomen to enter the chest area compressing the lungs preventing them from developing properly. We discussed the options with our consultant and agreed to continue with the pregnancy. We tried to remain positive and optimistic for the remainder of the pregnancy.
At 38 weeks my waters went with a loud pop and our beautiful baby girl Sadie was born just a few hours later. Sadie was immediately put on ventilation and taken to NICU. As the day progressed however it was clear that Sadie was extremely poorly, much worse than we had anticipated and later that evening the staff were preparing to transfer Sadie to Great Ormond Street or Leicester hospitals for specialist care. However, as quickly as Sadie deteriorated she also improved (slightly) and so Great Ormond Street would no longer take her. This is when we had a very quick lesson in how rapidly things change on NICU. Over the following five days however, Sadie continued to struggle and so we were transferred to Alder Hey Children’s Hospital, where Sadie was immediately placed on ECMO, a heart and lung bypass machine to give her little body a rest. Whilst on ECMO Sadie had surgery to repair the hole in her diaphragm to give her lung room to grow and hopefully repair. It was quite simply, a waiting game.
For the next four weeks we rode the roller-coaster of NICU. One night we were told that it was unlikely that Sadie would survive the night and we couldn’t leave the ward however within a couple of hours she had stabilised. Then, six days before Sadie died we were told that she would be weaned off ventilation in preparation for eventually going home.
It soon became clear, however, that Sadie’s little body had had enough; she was taking longer to recover from simple care such as nappy changes. Sadie was extremely poorly and the doctors explained that there was nothing more that could be done. On Wednesday 16th May 2018 our beautiful baby girl passed away cuddled in mummy’s and daddy’s arms. We were heartbroken.
The following day we told our (then four-year-old) son that his sister would not be coming home. From that day he has been incredibly brave and has shown a maturity far beyond any of his peers and even some adults. He always talks about Sadie and has a favourite song that whenever he hears it, he tells me it reminds him of Sadie. He is our inspiration.
My bereavement journey has been incredibly lonely. In the beginning I spent so much time on my own, I didn’t really want to be around anyone. I felt as though people were awkward around me and they didn’t know what to say. During the first few months my friends were all having babies too, this was hard to watch, whilst I was so pleased for them, there was also a feeling of injustice.
Each day when my husband went out to work and my son was at nursery, I spent my time in the garden which we dedicated to Sadie. We decided not to have a headstone or scatter her ashes we wanted her to be at home with us, and so each of the plants and flowers in the garden were chosen with a connection to Sadie.
Initially I didn’t have much support, as we fell through so many cracks. We live in one NHS Trust, Sadie was born in another and then died in a separate Trust. I was eventually put in touch with a bereavement nurse from the hospital where Sadie was born. This incredible woman saved me. She came to my home and gave me the space to talk and cry. She also put me in contact with an amazing woman who shares a very similar story. We get together regularly and openly talk about our babies and baby loss and guide each other through different milestones.
Five months after Sadie died I returned to work. It was the best thing for me, I needed some normality. My manager and team were amazing. I wasn’t treated as the woman who lost the baby. We chatted and gossiped about nonsense, and for a few hours each day the pain eased and I felt like me again.
We have recently welcomed our rainbow baby, who brings us so much joy and happiness. I am sad however that my three children will not grow up together. There is a silence I feel in my home where a very noisy, almost two year old voice should be. It feels unusually quiet, even when it’s at its busiest.
The first year following the death of Sadie and reaching all the milestones was hard, but as we approach the second anniversary I feel that this last year has been even harder. Grief is painful and exhausting, and can be overwhelming at times when you least expect it. I believe there is an expectation to get on with your life, but the further you move forward the more you realise the expanding distance between you and your baby, the last time you held them, or the last time you stroked their little hand.
Whilst it is a daily struggle learning to live again when your baby has died, you draw strength from those around you and for me it’s my children. As a family we include Sadie in everything we do, and we talk about her every day and we want others to do the same. In Sadie’s memory we have decided that each year on her birthday we are going to fundraise and donate to the amazing bereavement team at the hospital where Sadie was born. We want Sadie’s name and her legacy as a strong, little fighter to live on.