When it gets to this time of year I start thinking about when my youngest was born.
Those of you who know me will know that this pregnancy came after two stillbirths (Victoria and Olivia) and one live birth in between the girls – Alex.
When I was pregnant with Alex I spent six weeks in hospital because I broke my kneecap. I was allowed out at weekends to give me some sense of ‘normality’ – that’s a glass of juice, not wine, in case you’re wondering, and note the knitting needle for scratching down the inside of the plaster cast.
By the time I was pregnant after Olivia I’d finally been given the diagnosis of ICP, and with the help of my new obstetrician and hepatologist we made a plan that would assist them with research and help me keep my sanity. On 30 November 1992 I went into hospital and stayed there until I could have the baby. This isn’t typical for the management of ICP, but we’re talking 25 years ago, when nobody knew much about how to manage the condition and I was classed as very high risk because of the previous stillbirths.
Staying in hospital was so different then.
The internet was in existence, but used mainly for businesses and certainly not commonplace in UK households – we couldn’t afford a PC, let alone a laptop.
Mobile phones were also not commonplace (and were the size of a brick and definitely not smart), which meant I had no instant form of support like the women in our charity’s Facebook groups have today. If I wanted to speak to a friend I had to wait my turn for the portable trolley phone (and I couldn’t even find a picture of one on Google to show you!) which took all my coins like there was no tomorrow.
Each day could seem like a week in hospital. My then-husband tried bringing Alex (who was just over four and had started school) in to see me every day to start with, but we soon realised that this wasn’t going to work. The hospital was 10 miles away from our home and Alex was tired by the time he got to see me, and even though I was in a single room it’s hard to contain a tired four-year-old. It was all just too disruptive for him, so he only visited at the weekends.
So there I was, ITCHING, having to listening to Whitney Houston’s I Will Always Love You every day on the ward’s radio and making Christmas icicles using polystyrene balls (the midwives thought it would keep me occupied). Come on… you MUST feel sorry for me! 🤣
But it all went okay in the end. We got through Christmas, although I won’t fib – when the staff came round after visiting hours on Christmas Eve and sang Christmas carols to us I bawled my head off because I wasn’t with Alex. But by 28 December, and despite our second choice drug, urso, helping to improve my liver function, I think it was clear to my obstetrician that neither I, nor Tim’s dad, could mentally cope for much longer, and she decided that we should meet our fourth child before the end of 1992.
Tim was born, thankfully not to Whitney, but to the sound of Simply Red (which he considers just as bad), on 30 December 1992 and after a brief skin-to-skin session with me was whisked off to the neonatal unit and c-papped. He narrowly avoided total ventilation and it was a very anxious seven days, but the boy done good and came home with us (I stayed in hospital with Tim) after two weeks, weighing 4 lb 10 oz. I can remember taking him home in the car and my mum bringing Alex to the door as we pulled up on the drive. I was so overwhelmed to see Alex again that I promptly burst into tears – happy ones though!
Tim’s health hasn’t all been plain sailing over the years, but that’s not my story to tell, other than to say that no matter how old your children get, you never stop worrying or breaking your heart every time they have to suffer.
But on the whole he’s doing okay and this week the band he’s in, Sister Shotgun, released a new single, ‘Silhouettes’, and what a banging tune (as they say) it is!
Watching the video of Silhouettes (Tim is to the left of his bandmate, Niall, in the picture) brought it home to me even more how all the worry and heartache has been worth it. Tim was the best Christmas present I’ve ever been given and I am so lucky to have him and his brother, Alex.
But I’ve never forgotten how hard it all was, so if you are reading this and having to make your own difficult journey of another pregnancy following a loss or you have recently suffered the loss of a baby please know that you are not alone – although having been bereaved at this time of year I know how isolating it can feel. There are those of us who will know what you, your partner and your family and friends are going through and there is help out there for you. I love Sands for the wonderful support they provide and if you have or have had ICP we’re here for you too, so please do access us during what can be a difficult month.
Thinking of you all,