Daniela is one of our veteran parents participating in the development of the Integrated Family Delivered Care Programme. Her baby, Milo, was born at 24 weeks, and they spent nearly six months in hospital.
She wanted to share a message with you at the beginning of your journey:
‘Trying to describe the experience of having a baby in the neonatal unit in intensive care is very difficult. I thought I had time to prepare for it as I knew my baby was likely to be born very early, but the truth is that it is impossible to prepare… everything was just so different from how I imagined it.
Milo was born at 24 weeks and had a very long journey in the neonatal unit, first in intensive care then in low intensity care. He stayed in hospital for over five months and it felt like forever. I saw most of the other mums coming after me and leaving before me, and that was tough. The hardest part though was seeing my son going through daily examinations, x-rays, blood tests, having a ventilator for two months, going through several surgeries, getting so puffy that he was unable to open his eyes.
Although it was very painful to watch, I could not be anywhere else but beside him. I often skipped breakfast and lunch because I just could not leave him. One nurse one day told me that it would have been good for me to go shopping and take my mind off, but at that time for me it was unthinkable. It was hard enough to leave my baby at night; can you imagine going shopping? The only thing that made me feel better was being with my baby, watching him and caring for him, that’s what I wanted to do and that’s where I felt I belonged.
At the beginning it was exciting but also kind of scary and I needed the nurse to give me exact instructions, but the more I was involved the more things I wanted to do. I grew confident that I was able to care for my baby in the same way a nurse could. Doing kangaroo care was something I just loved. Unfortunately, I was not to able to do it as much as I would have liked, because my baby was so unwell and unstable, but once he was stable enough, after a long time, I would hold him for hours. It was the time when I felt closest to him and when I could really look at him closely and smell him. At night before falling asleep I needed that image of him in my arms.
Of course, after a few months there were some other things that I really enjoyed doing with my son such as breastfeeding – very hard – but being able to feed him from my breast was great and how I always imagined it. Weighing him, putting on an outfit that I bought for him, bathing him… all things I had to wait a while before being able to do. Maybe because of that it made it even more special.
Throughout my baby’s stay in the neonatal unit I met some amazing mothers: strong, determined and very resourceful. It was just really good to talk and perhaps share thoughts and feelings with them… There was a very special sense of empathy amongst mothers and it made the journey in the neonatal unit more bearable and less isolating.
As for the Integrated Family Delivered Care Project I think it is amazing and something I would have certainly done if there had been the chance when my son was born. I really think it does empower parents in their role; it does make them feel part of the team and allows them to become the experts of their baby from the very beginning.’