Raheem was born on July 1 2021. All seemed well and we were home after two days. It was when he was three days old, when the midwife visited, that she pointed out that he looked very jaundiced. This was the first time I had noticed it. The midwife informed me what I should be looking out for and what symptoms would require medical attention.
The following day I started to get concerned that Raheem was not his normal self. He seemed very lethargic so I took him to A&E as per the midwife’s advice. I was left in shock. Raheem was diagnosed with a heart condition and subsequently a rare chromosome deletion which meant he would have developmental delays and learning difficulties. It was very hard to take in.
When he was two weeks old, Raheem was diagnosed with prolonged jaundice and had bloods taken to determine the cause. I was very scared of what my baby’s diagnosis would be and how would it impact his quality of life. I hadn’t had the opportunity to enjoy my newborn baby as I was left traumatised by the other diagnoses. It was all too much for me and I just couldn’t bring myself to be there with Raheem as I struggled with my emotions when he cried as the doctors were taking bloods from him.
My husband stepped up at that time and I took care of my elder two boys, Shimmy who is now eight, and Kameel who is now five. I was missing Raheem when I was away from him, though, and I felt guilty for not being there for him when he needed me the most. In the end my guilt outweighed my fears, so I returned to the hospital to be there with Raheem.
Facing my fears
For me this was the beginning of putting my emotions to the side whilst I dealt with the situation at hand. In the early days I would leave Raheem with the paediatrician and nurse each time he was to have a blood test or a cannula put in but I realised that, although me being by his side wouldn’t stop him from crying, knowing I was there would give him some comfort. We were in this together! His pain was my pain so we could suffer together and I must not run!
