Thank you to my Bliss Champion – Karise’s story

As a lone parent, Karise felt especially alone on the NICU, until a Bliss Champion offered her support.

When I was 27 weeks pregnant and 200 miles from home, as I was visiting my parents in the West Midlands, I went into labour. Most of it is a blur. All I remember is being in a large room with numerous doctors and nurses, being poked and prodded with needles for IV access, and feeling restricted by the tightness of the fetal monitor straps and the oxygen face mask that a midwife was holding firmly to my face. I was frightened and quite hysterical to be honest (and I could’ve been nicer to the healthcare professionals).

But among the stress and chaos, my son was born, weighing a mere 950g. I wasn’t able to see him straight away: I heard someone say, “he’s breathing but he needs a lot of support”. That’s the last thing I remember before I passed out due to the pain.

Once I had regained my strength, I was escorted to the NICU where I was introduced to a fantastic neonatal nurse who took her time to explain what all the wires and tubes were for and why they were all needed. My baby looked so small and helpless that I burst into tears. After some reassurance, I was told that we were going to be transferred back to London where we would receive the medical attention and support we needed closer to home. Hearing that eased most of my anxiety.

But there was a shortage of beds in the NICU closest to home, so for two more weeks I had to travel to the other side of London see my son. I had thought that I’d at least be able to stay with him, but I was told that, although I was free to visit him without restriction, I couldn’t stay in the hospital. This was not what I’d expected to hear and I sobbed all evening after I left him for the first time. As a new mum and a lone parent, I was scared about what would happen and I became physically exhausted from the daily commute needed to visit my baby. Finally, when he was 18 days old, and weighed 1008g, we were transferred to my local hospital.

I felt overwhelmed by all the opinions and suggestions from various friends, family and healthcare professionals about what I should be doing so I became slightly isolated. A health visitor told me I had the “baby blues” but that they’d get better if I continued to bond with my baby, not realizing that he was in hospital so I couldn’t spend that much time with him. This made me more anxious about my mental health and my ability to look after him properly post-discharge.

I was sobbing in the parents’ room when a Bliss volunteer, called Barbara, came in and gave me a cuddle. She said “I know it’s hard but you’re doing a great job!” She didn’t know my situation or my story but her words were just what I needed to hear. She made me a cup of tea and gave me an opportunity to talk about what was upsetting me. During our first interaction she explained that her grandchild was also premature and shared her experiences about how her family coped.

We talked about my journey so far and how I hadn’t prepared anything for him and had bought hardly any of the necessities as I hadn’t expected him to be born this early. Barbara helped me to realise that I could use this time whilst he was being given the best care to organise and figure out what I needed. She gave me a Bliss booklet which had a list of items that I would need before the baby could come home. Barbara helped me to figure out the things I’d specifically need and also went so far as to help me sort out my financial situation. She became the mother figure I needed during our four-month stay, as my own mum was out of the country at the time and lived in another city.

Barbara came to the unit on Tuesdays and Thursdays, and each week without fail she was there. She went above and beyond to support me: she sat with me during the doctors’ rounds, supported me to care for my baby encouraging me with nappy cares, NG tube feeding and expressing. She helped me give him his first bath, encouraged skin to skin and became a real friend. Her presence made the weeks go by quicker and I will always be grateful for her dedication.

Sadly, I wasn’t able to say goodbye as she went off sick at the time we were discharged. I often think about her and how selfless and kind she was - her lived experience also allowed me to relate to her in a more personal way.

If you’re reading this, Barbara, I just want to say thank you! You were able to provide the emotional support that I so desperately needed at the time and didn’t judge me at all. Thank you for creating a safe space for me and the other mums to discuss our experiences, challenges and concerns. You were a rock for so many of us and you supported us all so effortlessly. Thank you so much for being there when I needed a little push to keep going and encouraging me to “keep calm and carry on!” Three and half years later and you still cross my mind when my son reaches yet another milestone. You played a significant part in my story and I will never forget you!

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