Saturday was World Prematurity Day and the hashtag was trending. Seeing my social media timelines filled with images that reflected our experience of having a baby, as opposed to what is the more mainstream experience, made me feel part of a very special group of families when I often feel isolated.
It was a year since I wrote my first blog on Leo’s early arrival and I reflected how so much has changed since then. Last year, I didn’t share the whole story. We were still relieved to be at home and seeing our baby thrive. We were enjoying normal baby things. We had our First Christmas coming up. I hadn’t fully allowed myself to feel the anger and grief that was circling around my head and I was still very much in the ‘taking it a day at a time’ headspace thinking that eventually, our life would plateau out.
Earlier this year I shared the information I had left out in this initial blog; our baby had suffered a brain haemorrhage and his development may be affected. On World Prematurity Day last year, I was putting my fingers in my ears saying ‘la, la, la’ and still hoping for the unlikely outcome that Leo would not be impacted by the damage caused. In fact, ‘hope’ was the theme of the blog.
I have had this post in draft for a couple of months. I was waiting for the right time for our family to share it. Lately, Leo has been doing so well and we are feeling positive. We don’t shout about Leo’s disability but we don’t hide it either. It’s just something about him. I have encountered ignorance about disability (and confronted it) for almost my whole life and I think the only way to counter it is to be open about the realities. If you understand someone’s journey then you will have more empathy. This morning I learned it was World Cerebral Palsy Day and I felt that it was the time to share this post. I am a lot less angry now than I was when I wrote it.
I know that people reading this will be from all walks of life, will do lots of different types of jobs and will have their own challenges to deal with. I hope that reading this will make them mindful that they don’t know what people are dealing with in life and that kindness should always be the default response when faced with someone different from you.
This summer, exactly a year to the day we were given the devastating news that our son’s brain scan was showing evidence of a brain haemorrhage, it was confirmed that he has Hemiplegic Cerebral Palsy. That means the right side of his body is impaired by the damage done to his brain. We knew this was a possible outcome but had remained optimistic. The signs over the last few months had been hard to ignore and my fears of these two words were realised.
Leo, the boy who had overcome all the odds to be born at 25 weeks and 5 days and not only survive, but thrive, breathing independently and requiring only dietary supplements on discharge from hospital three weeks before his due date. Leo, our baby who one week before his due date was undergoing surgery so a neurosurgeon could fit a shunt that would drain excess fluid that wasn’t been absorbed in the ventricles – another side effect brought about the bleeding on his brain. Leo, the amazing child who got through his first winter without a single bug. Fate was not yet done with Leo.
Ten months in… A while since I wrote my last blog. What does prematurity look like ten months on?
When we first brought Leo home. He was like any newborn – just smaller. He fed, he cried, he slept, he pooped, he thrived on cuddles. In a matter of weeks that would change as he underwent neurosurgery but soon we were back on the ‘normal’ newborn train. Eat, sleep, poop, cuddle and repeat.
In the last ten months Leo has grown, he sleeps all night, he makes adorable sounds, he kicks and wriggles, he enjoys porridge and purees and he puts things in his mouth. He is alert, aware and one of the cheeriest souls you will meet.
At ten months I see the distance with Leo and other babies widening. I know, I know. Don’t compare. All babies are different. They all do what they want and when they want. Leo doesn’t sit or roll… yet! But boy are we working hard. We’re filling 3-6 months vests now so we are on our way.
#PrematurityIs being told your baby is on his way into the world, foot first, at 25 weeks in the wrong city.
Friday 17 November is World Prematurity Day and the charity, Bliss, is doing a great job of raising awareness of prematurity. Prematurity is the leading cause of death in children under five around the world. One in ten babies is born prematurely.
I have had some experience of prematurity in my life so far. I was born five weeks premature. My youngest sister, Taylor, was born ten weeks premature. There were no signs during the pregnancy that my son, Leo, would be born at 25 weeks and 6 days. It had been plain sailing before that.
I am 16 weeks pregnant, and despite the subsidence of morning sickness, I am feeling increasingly sick. I thought pregnancy would mellow me. I thought the hormones would make me all warm and gooey and peaceful. I thought I would learn to choose my battles wisely and create a relaxing environment to cocoon the little one. But no, I’m even more angry and agitated that normal. My husband calls me the ‘little agitator’ which is a moniker first thought up for Lisa Simpson. She happens to be a role model of mine so I don’t mind. Lisa always stands up for what she believes in. She isn’t afraid to rock the boat. She certainly doesn’t mind disagreeing with the adults around her.
The topics that are getting me particularly animated at the moment are the number of people who are increasingly using the differences between us for political or economical capital.