Fee's World

I’ve been thinking about writing this blog post for about 2 months.

At the start of September we organised a ‘not back to school’ picnic for local home educated kids and families.

We met at a local park, there were loads of us and it was lovely. I then left with Chops to pick Miss W up from school half an hour away. I missed a call from London, saw they left a message, when we got to school I listened to the message, it was from our solicitor. Could I call him back regarding W’s case.

So I’m sitting in the van in the school car park, a bit early for collection, I call him back.

And after courtesy hellos, he says, (the hospital where W was born) “have accepted liability for Willow’s birth injury” and silence. Heartbreaking and exciting and heartbreaking and disbelief. And a stillness. Is this real?

They accept that, in all likelihood, had they acted differently our beautiful little girl would have been born unharmed. She would not have cerebral palsy, she would not be severely disabled, she would not have global developmental delay, she would not be deaf, blind, doubley incontinent, unable to walk or talk, she would not be fully tubefed, she would not be unable to throw her arms around her Mummy and Daddy and hug them, she would not be unable to follow a basic instruction such as, “close your eyes, sweetheart and you’ll drop back to sleep”. She would not be unable to fully interact with her peers, or anyone. For her lifetime.

Right then, in that sentence, all of those things came crashing down. This was not “just one of those things” like the head of midwifery told me earnestly, and there WAS a case worth pursuing, against her advice. I’m so pleased we ignored her and instead decided to get a solicitor to look at the records and decide if there was a case or not.

I had that conversation 6 years ago. 6 years since we contacted a solicitor and asked them to look into what happened. 7 years ago the life of our little family changed in a massive way.

This is today. And that day at the start of September was the day life changed all over again. In a crazy and wonderful and messed up way.

I don’t think I had ever imagined how it would feel to win the case for Willow. In my head we would go to court, that was planned for Spring 2020 some time, I was dreading it, bringing everything back up yet again. We’d had the expert statements and opinions based on the records back in February time, we knew both expert midwife and obstetrician were independently in agreement that our girl should have been born significantly sooner than she was, had protocol been followed correctly. 10 minutes here, 10 minutes there, another 10 elsewhere. Every minute a minute that our baby was without oxygen.

It was not just one of those things. We did not recieve the level of care we should have, people did not act quickly enough, processes we’re not followed correctly, the correct advice was not given.

And in the last few months my mental health has gone from rock solid to WHAT THE FUCK?

Liability is a total head fuck. Amazing and heartbreaking in one.

In the weeks that followed, I’d find myself driving along and suddenly crying with the realisation that we do not have to fight any more, those battles are over. I’ve been fighting for Willow’s needs to be met for 7 years. And it is a fight, that’s undeniable. I started fighting before she’d even left hospital. We fought for her to be seen by speech and language. Thanks to us a new contract was set up with a specialist SLT from another hospital so that babies ‘like Willow’ could be seen and assessed because she fell into a ‘grey area’ after changes to the local Speech and Language, apparently, who refused to come and see the baby who didn’t cry and had no swallow.

The fight didn’t stop there. There was a battle against the dietician over feeding, though at the time it didn’t feel like a battle because there was no way I was feeding my brain injured baby ANYTHING other than human breast milk for her first 6 months, end of, so I ignored the department from 4 months to 9 months, I wasn’t allowing that fight to take place. Actually, I battled on with expressing my milk for her until she was 2 years old, being held firmly, securely and sitting on the shoulders of our amazing tribe of Mama’s, passing their milk up through me to our baby held high like a golden shrine.

I should think she’s a very rare person to have recieved the magic milk and motherly love of 13 women and it shines out of her every pore. My battle with the breastpump ended with a 5ml pump on the morning of her 2nd birthday. I’d been calling it her medicine for weeks leading up to that point, allowing my supply to drop naturally. Not giving up.

Battles, battles, battles. Therapy not available on the NHS, equipment not available in our postcode, repeat, repeat, repeat. Battle, battle, battle. Taking matters to the CCG, to our MP, making formal complaints, injustices everywhere. Wheelchair services HELL, those people need sacking and taking to court themselves for their behaviour and treatment of families in their supposed care. Knowing there was better provision, knowing she deserved and needed better, fight, fight, fight.

Fundraising for things that she needed to meet her basic needs and things that might improve her life. I will say now, I HATED fundraising. I HATED repeatedly asking for help from family, friends, strangers, for things she needed that would not be provided in our area by NHS and we couldn’t afford to buy her ourselves. I also loved that so many people wanted to support her, but it’s hard work and it doesn’t come easily to fundraise for your own child.

And poof. It’s all gone. A lifetime of battling, fighting, being as tough as fucking nails for my kids but as soft as a warm feather bed for them too. My life just changed with one sentence.

They accept liability for Willow’s birth injury.

Fuck.

Then comes what a lovely friend who has already been through it called, ‘survivor’s guilt’. I’m still there. And I’m angry.

Am I angry with the NHS? With the midwife who didn’t give the correct advice? The midwife who took too long to call an ambulance? Who didn’t follow procedure multiple times? No, I’m not. She’s human. She made mistakes that night that she will have been living with for the last 7 years. We all make mistakes. For a midwife they can, however, be far more catastrophic, as with most medical professionals. But I’m not angry with her.

I am, however, thankful that she was insured, unlike a good friend’s independent midwife. She made mistakes, too, catastrophic ones that have left the baby severely disabled, much like Willow, but unfortunately the insurance she deemed appropriate would barely cover legal fees in reality and would go nowhere in the life of the child and their needs. Breaks my heart. Wrong.

Am I angry with the ambulance service who took more than twice as long as they should have to arrive to take us to hospital which was just 12 minutes away? We would have been at hospital 5 minutes before the ambulance had even arrived at our house had we left when they were called. No, I’m not, because the reason they took so long to arrive and the reason Mr T arrived in our own car several minutes before the ambulance, which left for hospital at the same time, was because the Tory Government, at the start of their budget slashing rampage, had cut funding to our local ambulance service, there were no ambulances available to come and save our unborn child. An ambulance had to be sent from the next closest hospital. They weren’t aware of a road being closed and a diversion in operation because they weren’t local and the fact they got there as soon as they did considering where they came from was amazing.

Nope, that isn’t what I’m angry about, though I am ANGRY at the Tory Government who are continuing to rip our amazing NHS apart but stripping funding from all facets of the NHS.

What is really boiling my piss and messing with my head is that Willow is now going to get everything she needs to meet her basic needs, extra needs and anything that might possibly benefit her. That might sound like a strange thing to be angry about, but I’m not angry about Willow, I’m really fucking angry that it’s taken this to give it to her. I’m angry that money will, in all likelihood, improve her quality of life, it might even extend her life. Probably not because we would have continued to fight for her needs to be met, but that might not be the case for all children with severe disabilities. It. Is. Wrong. Really, really, really wrong. Every child who has a need for equipment, therapy and services that will help them achieve their potential, should recieve adequate funding WITHOUT a fight. There should be a specialist assigned to every child with severe disabilities who will ensure that that child has their needs met, regardless of cost. Not abandoned to the will and fight of their knackered parents to find, work out, research, and pay for what’s best for their child.

We have friends out there in internet world and in our lives, friends whose kids we love like our own, who have no money pot, no liability acceptance which means their child can have everything they might need workout a fight. They will still have that, with bells on, but only because they’re amazing parents and will fight for it every single day, week, month and year of their lives. They will battle, they will fundraise, they will kick serious arse. And I’ll be standing shoulder to shoulder with them whenever and wherever I can. But fundamentally we don’t have to do it ourselves any more. And that’s survivors guilt. And it’s a total head fuck. I want to share the money between them all, but we can’t, it’s there for Willow, to cover her for life.

And sleep. Sleep is on the horizon! We can employ carers to look after Willow overnight. We can do bedtime, help her to sleep, then a lovely carer or nurse can come in and sit by her bed overnight, so we don’t have to. They will see to her when she wakes at 1am, 2am, 3am, 4am, whenever! They will give her her midnight meds and suction get through the night or reposition her if she needs it.

Life is about to change. It’s amazing. It’s heartbreaking. It’s infuriating. I’m relieved, I’m happy, I’m angry, I’m sad.

We now have years of assessments from both sides as they assess Miss Ws needs. We had to read a report detailing our girl medically, physically, mentally, including the expected duration of her life. There were no surprises but it’s hard to read in black and white based on averages. Another reminder that she won’t live a standard life. Not that we expected she would but it just sets the thoughts rolling of what will never be.

She’ll never be a little old lady, nor a middle aged woman, because mistakes were made, not because of “just one of those things”.

But some things don’t change. I love that girl with every fibre of my being, fiercely, deeply, tenderly. She is pure innocent human, without spite, jealousy, hatred, unkindness, none of those human trappings that aren’t so nice. She is love. And she’s bloody gorgeous! And she is ours. Go, Willow, Go.