12 hours passed….it’s a tummy bug, no big deal. 24, still a bug, a nasty one. 48…doctor’s appointment booked for later that day. Two hours before the appointment I called 111, six year old Bella was in so much pain I was contemplating A&E there and then. But they reassured us we could hold on to see the GP, who that afternoon decided that even if it was just gastroenteritis, 6-year-old Bella was getting dehydrated and needed some fluids overnight. ‘Cancel your plans for tomorrow’, I told hubby. ‘We’ll be there at least until the morning’. I grabbed a phone charger and pair of clean pants on my way out the door.
But as soon as we got to the children’s ward at our local hospital, she just kept getting worse. The cramps – she was screaming that her belly button was ‘stinging’. The vomit was forest green. She was pale and clammy. They did blood tests and x-rays and scans, and it all showed crazily high levels of inflammation, but not why.
After ruling out appendicitis we were transferred by ambulance to the children’s specialist hospital in Southampton. The pain got worse. She was now screaming for 15 minutes non-stop, still couldn’t keep even a drop of water down (at least the drip was keeping her semi-hydrated now), the vomit was still coming – with no food or fluids it was pure, dark green bile. Doctors came, more tests and scans were done. Nothing was found.
She was weak, scared, delusional with malnutrition and dehydration. What’s wrong with my baby? Why can nobody help her?
Two days passed. The only thing calming my fear was the medical staff’s attention to detail and determination to keep her safe and find out what was wrong. I can’t fault them in any way. But my baby was in pain and I couldn’t help her. I slept on the camp bed next to her but when I say slept, she was up every hour in pain, vomiting, or being woken for tests.
Then the diarrhoea started and we were moved to an isolation ward until it was tested for bacterial infections. They came back normal. And when I say diarrhoea, I mean Bella had absolutely no control of her bowels, and I had to lie that the pull up nappies we put her in were grown up kids’ hospital pants, since she didn’t want to be ‘a baby’. But when I say diarrhoea, she was ejecting blood.
I wanted to scream and cry, someone do something, please somebody help my little girl, what’s wrong with her? But it wouldn’t have helped. The staff were doing everything. They had her under close watch 24/7. But until we knew what was wrong, they couldn’t stop it.
A nasal tube was inserted, but not without a fight. My normally delightful little princess was doing the 6-year-old equivalent of effing and blinding, screaming at us like she was possessed. She’s not eaten or drank for days, she was in pain, by now clinically malnourished, scared and confused.
It was like a scene from The Exorcist; ‘I hate you! Go away! Get off me! Get it [the tube] out of me! Let me go! I want to go home! I hate you all you’re the worse people in the world! This is the worst place ever and I hate you all!’.
I fought back the tears and gritted my teeth to stop myself from screaming as I pinned her arms down to stop her pulling the tube out. I tried bribing her saying she could have any toy she wanted, any family day out, anything…. if she kept the tube in. Out of exhaustion she drifted off to sleep a few times, only to remember the tube and start screaming again and I’d have to hold her down. After 30 minutes she vomited the tube right up and the staff decided not to try again.
Morphine was prescribed, the IV fluids were still going in, she was stable, but not improving in any way. And then the rash came. I spotted it while helping her onto the commode, a few red dots around her knee. Within minutes there was more on her shoulder, then ankles…..and it wasn’t fading. She had no other symptoms of meningitis but what I knew of the condition, time is off the essence and I insisted on testing for it. The nurses responded immediately to my request, but again, it came back normal.
Five days in and I’d gone from scared to distraught to angry and back again, and was now starting to feel nothing more than hopeless and helpless as my sweet little girl who wouldn’t hurt a fly was deteriorating before my eyes. Just find out what’s wrong with her? Please? How long is this going to go on? When will my baby be ok again? Other children in the ward came and went, in for short, planned stays for a minor op or short-term problem. The staff shifts came and went, we got to know the nurses by name, we fell into a routine of medication and observational tests and me grabbing five minutes to go to the café to get myself food while Bella slept (often not until gone 2 pm, by which time I may not have washed or got dressed either) and I couldn’t see the light at the end of the tunnel.
It’s funny, but if I put to you the prospect of having to stop life at a moment’s notice, cancel all plans, leave home with no possessions and rearrange, well, everything (I also have a 10 year old daughter I am the main carer of….it’s me who gets the school bag ready and takes to dance classes and makes sure teeth are brushed.). But when it happens, everything else seems unimportant. The house will be a mess, so what?
Homework might not be done on time, the washing will pile up, emails will be ignored, bills will be paid late, I’ll miss meetings and cancel social events. None of it matters and it’s all just trivia. Why does it take events like this for us to realise these things?
It was a junior doctor who brought the news that was as heart breaking as it was a relief to finally have an answer. Bella has an autoimmune condition called HSP (Henoch-Schönlein Purpura). Her body is attacking its own blood vessels hence the rash and bloody diarrhoea, and her whole intestinal lining is inflamed. Like all autoimmune conditions, there is no known cause, no cure, and treatment is keeping the person stable while you wait for the episode to be over. Best case scenario some kids are at home on the sofa for a day before going back to school. Our worst outcome? Weeks if not months in hospital, permanent kidney damage, and recurring relapses for years to come.
I should have at least been relieved to know what the diagnosis was, but I wasn’t. I pictured my bright as a button, top of the class daughter missing out on school and her social circle. Going abroad on holiday would always be a fear in case she needed medical attention. She could need round the clock care for weeks at home. What sort of life is that for a little girl? Why can’t she just be normal and be able to do all the things she wants to do, whenever she wants to? Why does life have to be so cruel?
Night times were the worst, as in the peace and darkness among the dim strip lighting and beeping of machines and hushed voices of night staff I had time to think. She lay there skinny, weak, sedated with morphine, strapped to tubes and wires and machines, punctured with dots and bruises from all the blood tests and IVs.
Do you ever wonder who’s in charge of our universe and think, whoever you are, please just tell me why? Two weeks ago she was skipping all the way to school and fighting with her sister. I wish she had the energy to fight now.
The steroids were started. Every urine collected was dip tested. A ‘picc’ line was inserted and she was fed all her daily nutrition through the drip. There was nothing we could do but wait and watch. 10 days into hospital and more than two weeks’ after she’d first been sick at home, I’d resigned myself to this new routine now. I had no idea when we’d be going home and the passive acceptance of that was strangely mellowing. We just went with it, going through the daily routines of hospital life.
The time together was special. The cuddles, the rubbing her back and feet to relax her, reading stories, and when she had more energy, doing the crafts and puzzles in the magazines she was given by friends and family. Never had I had so much uninterrupted time with Bella. It was something I decided to continue back home. Proper Mummy time. The washing can wait.
But turn around she did, and while steroids are a last resort and doctors don’t like to use them, slowly Bella started to be awake more. She started asking for food. And two weeks after we were admitted, she could go home.
I should have been elated and relieved but I was scared. This wasn’t a broken leg. What if she gets worse again? How can I keep my baby safe when I’m not medically trained? How will I know if she’s ready to go back to school? I was given information sheets, checklists, urine dipsticks, medications and prescriptions, and presumably their trust in me that I could do this. It’s the ultimate ‘am I a good enough Mum’ panic when it’s literally their life in your hands.
But West Sussex have an incredible HSP after care service and Bella has a nurse who visits every week. All the tests are done, Bella eats well, has gained weight, and at the time of writing has just started iron since she’s anaemic, so her energy levels improve each day too. Three weeks after discharge she manages a full day at school most days, and while she goes to bed early and doesn’t have as much energy as she used to yet, she’s making slow and steady progress.
While Bella will very likely make a full recovery (her kidneys have so far thankfully been fine) and she may never relapse, it’s a fear that’s not left the back of my mind. Holding your weak and thin child over a pot while she excretes bowls of blood, violently throws up everything her liver produces and screams in pain like she’s being tortured, is not something any parenting book will teach you how to deal with.
Trying to keep calm and sooth her with ‘It’s okay sweetie, Mummy’s here’, when all you want to do is scream and shout and cry at the top of your voice for someone to help your baby.
You must hold it in because letting it out doesn’t help. The medical staff are doing everything they can and me getting upset would only scare Bella more.
I’m not sure I ever really got to release all of those emotions. Nobody apart from other parents in similar situations would ever really understand. So I decided to write about it and maybe give other parents a place where they can respond and relate and know that what they’ve been through – there’s others here who have too.
Nothing in this blog is intended as medical advice or to diagnose. I’m not medically trained. But Mums know when something isn’t right. If you’re worried go to your doctor. If it’s more serious it may well be horrific for both you and your child. But they’re in good hands.