On 17 November it’s World Prematurity Day – a global movement to raise awareness of premature birth and the sometimes devastating impact it can have on families. In this blog, Stacey, Mum to Tiffany and Ricardo talks to us about her experience of having a premature baby, how it affected her and how she was able to form connections with other parents who went through the same thing.
When I was pregnant with my eldest son Ricardo, who is now eight years old, I had severe sickness – I couldn’t even have sips of water without being sick. I spent a lot of time in hospital having fluids intravenously with additional baby monitoring. Thankfully he was growing well and my consultant gave me constant reassurance that he had no concerns.
Unfortunately, at 32 weeks his heart rate failed to meet the criteria as it was low. The decision was made to have an emergency caesarean. It was explained to us that our baby would need to go onto the Neonatal Unit and that the neonatal team would be present when he was born. The next few hours were really difficult, but I remember the hardest part was coming round after my anaesthetic and being surrounded by new mums and their babies. We had to wait a few hours for him to stabilise before we could see him on the unit.
Nothing could have prepared us for seeing our little boy in an incubator covered in wires and tubes. The noises of the machines keeping our baby alive were so frightening.
On World Prematurity Day, I wanted to raise awareness of the fact that unfortunately, although we all wish for a healthy baby, that isn’t the case for many families. We had a stressful and traumatic time waiting for our baby to grow and learn simple skills such as feeding and breathing, and kept us worried for many more months afterwards, due to his early arrival.
Ricardo was nine weeks old before we heard him cry. The terms we were used to using with him weren’t like any I’d prepared for or heard before. “Corrected age”, “delayed development” and “tube fed” were all phrases I began using on a weekly basis that were met with confused looks by friends. We learned how to feed him through a tube into his stomach and had to have CRP training before we could bring him home. After being discharged from the neonatal unit at ten weeks old we were lucky to have neonatal nurses visit us weekly and sometimes more frequently at home – they became a part of our family, staying with us until he was just over a year old. Every time we thought he was close to being discharged, a new worry or concern would arise that would require their support.
The long-term effects and complications from being born prematurely varies greatly from baby to baby. I remember his first winter, we hardly ever went out with him as he was prone to infections and his immune system was weak – we spent many nights on the children’s ward having to give him antibiotics. He needed extra support from services such as physiotherapy, speech and language and hearing. We also had a paediatrician and orthopaedic consultant until he was two years old. Thankfully, by the time Ricardo started full-time school, he had caught up with his peers and no longer required the extra monitoring.
When my daughter was born at 34 weeks she was given steroids to help with her lung development. We expected her not to need neonatal support, but unfortunately, she had bleeds on the brain. Our neonatal journey the second time around. Although we were more familiar with what to expect, her long-term needs were very different. It was only then I realised how lucky we were with Ricardo’s development – even though I suffered from post-natal depression after having him.
Many babies are born earlier and have life-limiting conditions because of it. They can be born with learning difficulties and conditions like autism and physical disabilities such as cerebral palsy. 1 in every 13 babies born in the UK will be born premature (before 37 weeks of pregnancy). Sadly, prematurity is the leading cause of death in children under five. I got to meet many families whose children had long-term health complications due to their prematurity when using services with my daughter Tiffany. Today on World Prematurity Day I wanted to share our story with other families to remind you that no matter what your story is, or how far along you are, you are not alone.