Over the past year we have been honoured to share the story of Lorna and her gorgeous triplets; Roman, Eva and Essie. Heartbreakingly Essie suffered a brain injury during birth and as such Lorna and her family have had to learn their own routines for living a disabled baby. They are an inspiration to us all and the strength and determination to give Essie the best is evident in everything Lorna does. Last week Lorna was asked to speak at the ‘Together for Short Lives’ charity inaugural fundraising dinner and we are delighted that today we can share that speech with you. It is insightful, inspirational and truly reflective of the love this family has.

Good evening everyone, I’m Lorna and Mummy to Roman, Essie and Eva. They are 13 month old triplets and were born prematurely on 1 February last year at 32 weeks and 1 day.

It was a shock to find out I was pregnant with triplets. I don’t think laughing and crying at your 12 week scan is the typical reaction that the ultrasound person expects to see! It was a normal pregnancy – aside from being high risk from having high multiples and an added risk from having identical twin girls who shared the same sac and placenta. We got past 28 weeks and the risk of TTS (twin to twin transfusion passed, or so we thought) and started buying everything for our babies in threes – including a triplet buggy that had to be shipped from Australia.

But after a pregnancy that was as normal as we could have hoped, something went wrong at birth. It quickly became apparent shortly after the babies were born that Essie (triplet two) was struggling, so in the very early hours of the day she was born – and after my husband had just left me to go home – I watched Essie be packed up and head off in an ambulance to St George’s Hospital where she would get the higher level of neonatal care she needed.

Why is Essie a life limited child? She suffered what the doctors called a “catastrophic” brain injury from birth, which led to her body essentially shutting down due to a grade IV lung haemorrhage (grade IV is bad, the worst actually, one of many medical things I now know) and this has meant she has severe cystic Periventricular Leukomalacia. PVL – as I can never remember how to pronounce it fully – means that her brain has collapsed in on itself and been replaced with large pockets of fluid. Because of this, Essie doesn’t have much brain tissue left at all – and has a beautiful tear drop shaped head – and it goes without saying that this means she is severely disabled

We have affectionately nicknamed Essie a tortoise. This is something we called her very early on, and filled in the sign above her bed in the neonatal unit at East Surrey Hospital – when she got transferred there to be nearer to home when she was four weeks old – not many people filled in the sign, but I did as my little lady was there for another seven weeks and wrote: “My name is Essie and I’m a tortoise. I do things slowly and in my own way. If I don’t like something I’ll let you know”. We were told to expect no sight, no hearing, no mobility and no communication. But Essie can see and she can hear. This is just one of many examples of Essie being a tortoise and fighting to prove medical professionals wrong each and every day. She is an inspiration.

What does life limited mean? It isn’t having a terminal illness. It means that any day Essie could leave us. Her vulnerability to infection is the biggest risk we face each and every day. A cold in Roman or Eva means pneumonia for Essie. She’s only just finished another week long stay in hospital with pneumonia which started off as a runny nose in her brother.

Day to day, our life with Essie is challenging. It might be stating the obvious, but it is bloody tough. She has chronic lung disease so needs to be on oxygen 24/7 with tubes that are far too appealing to little hands. Essie developed severe epilepsy at 14 weeks old and has seizures everyday as we are still trying to find the right balance of medicine to manage these. It’s a constant analysis of ‘is she coping’, ‘does she need rescue medication’ and when she has a bad seizure that means she’s very stiff, very red and screaming in pain for three minutes you feel utterly helpless. Next on the list is an unsafe swallow – so unsafe that Essie isn’t allowed anything orally, not even a dummy to soothe her – she has a diet of milk only (which has been restricted in volume to stop her putting on too much weight) and this was via a NG tube (nasal gastric) for a year but now is via a PEG which is a tube directly into her tummy, as she was finally able to have the operation last month.

What else? And sorry to sound so flippant about this, but it’s just our reality. Essie suffers from hypothermia – so often wears her signature woolly hat that earned her the nickname ‘Baby Compo’ (for those who are fans of Last of the Summer Wine!) and whether it’s the height of summer or the depths of winter; she will be found under lots of blankets, both indoors and out. She has a sensory imbalance so absolutely hates being naked – this means traumatic nappy changes, hating getting undressed and dressed, but most of all bathtime is horrid. Essie has a full blown panic attack when bathtime happens and if she doesn’t start to get distressed when I put her in the bath, I wonder what’s wrong. This is when it’s tough, as it’s the little things that you are supposed to enjoy with your baby that Essie hates, with a passion. I find myself frequently saying ‘it’s not her fault, she can’t help it’.

Essie is also prone to apnoea and turning grey, when she forgets to breathe. Sleep deprivation is our worst enemy as Essie doesn’t sleep and will frequently have a neurocry for most of the night. What gets to me is the fact that she cannot play with her brother and sister as much as we’d like – simply because of her tubes on her face and tummy. Although they do think her baby wheelchair is an amazing climbing frame.

I have a photo that I will treasure forever of Roman and Eva lovingly surrounding Essie in her baby wheelchair when she came home from her operation last month. They truly love their sister and are fascinated with her. Equally I think that Essie responds so well to hearing her brother and sister play – I’m sure they are one of the best forms of medicine Essie can have.

Essie has a lot of equipment that accompanies her each and every second of the day. Getting out of the house is a challenge, but it is doable with military like precision and organisation. It’s quite simply outrageous that we don’t get any mobility component in Essie’s Disability Living Allowance, as you can’t even apply for this until a child is three years old. Even with a child that has the prognosis and diagnosis that Essie has.

The lack of communication is hard, as her brother and sister are a direct comparison for ‘what might have been’ as they start to babble and say ‘Mama and Dada’ – we don’t get this from Essie. We are still waiting for her first smile.

Oh my goodness, I hate hospitals. I am so thankful for the NHS, but seriously the amount of hospital visits my beautiful girl has had to go through is ridiculous – the planned ones and the unplanned ones. We have now called an ambulance so many times that dialling 999 doesn’t make my body flood with adrenaline like it used to. I’ve had to become a medical expert and can talk Essie’s condition and symptoms using acronyms and medical jargon with the best of them. Essie suffers from pneumonia a lot; we’ve now had over six lots since August and have also nearly lost her twice because of this.

I dread the ‘Unknown Number’ phoning us when Essie is in hospital as it invariably means being called in the night to say she’s deteriorated and us needing to decide if the hospital is being overly dramatic or this is “it” for Essie. We have an Advanced Care Plan in place for Essie, that says she is has a do not resuscitate order in place, but it also details what we want and don’t want to happen with Essie’s care. We had to get this put in place last summer, as came across a lack of understanding in hospital about what a life limited child means – both for the child and the family. Hospitals treat acutely not palliatively.

Being Mummy to a life limited child diagnosed so young means being told “no” – which started in a room full of 20 people discussing a discharge planning meeting before Essie could come home from hospital at 11 weeks old. The only friendly face in the room and person offering support was Mel from Chestnut Tree House who didn’t even really know us at that stage – and it just felt like an ambush. I sat there and cried most of the meeting as they said we would not get any support as Essie is a ‘newborn baby, who you expect to care for 24/7’. This decision was made by a tick box paper questionnaire and no attempt was made to get to know Essie, our family or our unique situation.

So how did we get support? I had to go to the media to pressure the NHS to help out – say what you want, but the Daily Mail does have its uses after all! Others wouldn’t have done this. Having your story made public isn’t what you want. You are essentially grieving for the child you didn’t have and doing this in front of everyone. There is still a stigma attached to having a child with disabilities, which really angers me – and social media perfection is never your friend.

Having a severely disabled child under three is very hard. There is no support. No funding. No understanding. No appreciation of the rare and unique situation you find yourself in.

What help do we get? We have a night nurse for three nights a week (but this was only put in place when Essie was 10 months old, and it was almost as if they didn’t they believe our sleep deprivation). We have had to open our house to strangers, which is an adjustment process in itself, with a carer every evening that comes to help, but while the package is for Essie, they can’t help us with Essie as she’s deemed too high risk. I am a working mum and have an amazing Nanny, who we have trained ourselves and know she will always call to ask anything she’s unsure of. Then there is our saviour – Chestnut Tree House, Essie’s children’s hospice. They are our friends, our support and our counsellors.

There has been unexpected support too – the maternity nurse we had when Roman and Eva first came home from hospital and who still comes to visit us and the babies now, the Norland Nanny volunteer (provided through TAMBA Helping Hands) who was there the day after we finally brought Essie home from hospital and were in our darkest place, my Instagram community – Essie is known as a tortoise here too. But all the support we have, we have had to find ourselves.

It was amazing to have everyone in the room for the babies’ first birthday party last month – friends and family that have supported us through the journey of our first year as parents; we even managed to keep Essie on lockdown for January so she stayed well enough to celebrate her birthday. There was no way I was going to have her in hospital and miss her party! Especially when hidden on Essie’s layer of the triplets’ three tiered birthday cake was a little iced tortoise.

I like to think that Essie is a little bit insta-famous and inspires many people. I want to show that having a life limited child doesn’t mean your life stops, no matter how tough things are. Essie is lucky, she has her legacy already in place – it’s her brother and sister. The fact that Roman and Eva’s development hasn’t been impacted at all is a source of immense pride to me, even with all the guilt I carry of not being able to give them as much time as I’d like.

Fighting is hard. You have to fight. Each and every day. But when you have a life limited child, time is not your friend. I fight because I will do whatever it takes for Essie and don’t accept “No” as an answer. I’m lucky to be a team with my husband; we support each other and fight for Essie together. Nothing like total adversity to test your marriage and make you realise you married the right person, no question.

But others don’t challenge. I fight for Essie because I’m fighting for every other mother, parent, carer who needs it to not be a paper questionnaire that decides eligibility. Being told “no” wastes time and we don’t have time.

That’s why Together for Short Lives is so important – they speak up for families like mine and children like Essie – helping us to access things that make our daily lives less of a struggle and enable families to do what matters, spending time together.

I want to be with Roman, Essie and Eva as much as possible. Help us make things easy and automatic and funded by government. Help make Together for Short Lives voice heard as loudly as possible and by as many people as possible

Needing help is not something I ever thought I’d have to ask for. I ask because we need it, because without it we won’t have time with our daughter and time is the one thing we need to create memories

Let’s keep moving things forward, slowly but surely every day, and fight for what is desperately needed. Be like Essie, be a tortoise.

You can follow Essie’s story on Instagram @mummylovesessie