With just over two weeks until World Prematurity Day, the chances are you will be hearing the words premature, NICU and neonatal quite a lot for a little while. There will be lots of talk on social media about prematurity, and probably a lot of focus on premature babies in the media. Neonatal charities and organisations from across the world will also be marking World Prematurity Day with various events. You’re likely to see lots of purple about too, which is the International World Prematurity Day colour. Before World Prematurity Day kicks off we want to talk about prematurity and the impact having a premature baby can have, not just whilst your baby is in hospital, but in the weeks and months afterwards. Life beyond the NICU isn’t always easy.
Few people expect to have a premature baby. Few people expect to end up on the neonatal unit. But the reality is 1 in 10 babies are born prematurely.
Before you become part of the “NICU Club” you maybe don’t understand what prematurity really means. Some people think having a premature baby can mean your baby is small, or your baby might need some help keeping warm, feeding and growing. Thankfully for some babies that can be the case. But for the others the reality is quite different. Premature babies can face weeks or months on the neonatal unit. Premature babies face continuous medical intervention and procedures. They will most likely be fed through a tube, and will spend their first days, weeks or months in an incubator. Very premature babies will need intensive care and help with their breathing. Premature babies are vulnerable to infection and can get very sick very quickly. There is also the heartbreaking reality that some premature babies won’t make it home. Some premature babies are just too tiny or too sick to survive.
The journey of a premature baby can be tough, and unpredictable.
Parents of premature babies face a “watch and wait” situation from the word go. They face so many what ifs. “What if my baby doesn’t walk? What if my baby doesn’t talk? What if my baby gets sick at home and I don’t know what to do? What if there is damage we don’t know about?” Parents are left asking themselves these questions. It’s mentally draining and exhausting.
Life with a premature baby is unpredictable from the beginning, and it continues to be when your baby is home. Just because your baby has been discharged from neonatal care it doesn’t all of a sudden erase the stress and trauma parents have faced. Those well intended words like “you can put it all behind you now” or “he’ll catch up” can actually be quite hurtful for parents who have experienced premature birth. Constant reminders from other people that your baby is small for his age, or not hitting those magic milestones, are difficult to hear. Premature babies have different milestones. Even at school age, children that were born premature can still have to deal with the consequences of their early birth, whether it be a weaker chest or immune system, behavioural problems or learning difficulties. Prematurity can impact on so much. It can be difficult getting support for children at school who don’t have a diagnosis of something. It can be hard for the child to keep up and that brings new challenges to parents.
Thankfully some babies that are born prematurely go on to have absolutely no health problems. They develop as they should and meet their milestones, and that’s fantastic.
But that’s the point – prematurity is unpredictable. You just don’t know how the life of a premature baby will pan out, and for parents that is incredibly stressful. That’s why this month we will be joining colleagues, friends and families in raising awareness of premature birth and the impact it has on everyone.
We will be marking World Prematurity Day with some celebrations and fundraising events. We will be honouring all amazing premature babies and their families. Please get involved and join us.
Useful links for those affected by premature birth: