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Sophie

Baby Loss Awareness

Lessons learnt

Today the interim report for the inquiry into Shrewsbury and Telford Hospital NHS maternity unit was reported in the news. This has come at a painful time. Nearly three years since Lexi died, reading this and other articles surrounding the investigation magnify the heart breaking experience we had and are still dealing with. 

In the weeks following Lexi’s death Maidstone and Tunbridge Wells Trust promised a full and thorough serious investigation into her death. They came to our home a few weeks after she died, when we were completely broken, to reassure us how they would be “open and honest.” Sadly nothing could be further from the truth. 

The investigation was quite frankly a joke. The woman leading it, who had been to our house and asked us to recount all the painful details of Lexi’s birth and subsequent death, who we were led to believe would be our voice in the investigation, never passed any of the information we gave onto those working on the investigation. She also did not attend the meetings concerning the investigation. Instead the people who investigated only looked to the trusts version of events and the most astonishing part, where they didn’t know what had happened they made assumptions. One of the most heart breaking assumptions I had to read when presented with their report was that I had supposedly forgotten to feed my newborn baby. They had assumed we had been too busy with our other children. How anyone could even think that someone could forget to feed a newborn baby is beyond me. The fact that they wrote this and subsequently submitted it in their report to the coroner for Lexi’s inquest was indescribable. The pain and damage their actions caused can never be undone. Following a 12 page letter we sent to the trust highlighting the failings in the report I received assurances that the report would be revised. The trust was “Sorry it fell short of our expectation.” An expectation that they would have actually investigated the events that led to Lexi’s death. The coroner at the inquest was not able to attribute blame, that is not the job of the coroners court, but he was able to highlight in his statement that I was an experienced mother and my concerns with my daughter should have been listened to. The coroner also thanked me for the evidence I had submitted that showed they had lied in their report. Maidstone and Tunbridge Wells Trust refused to look again at their investigation or report as to them their findings were accurate. Findings that included “there was no evidence of any infections.” Findings that were completely quashed by the experts that spoke at Lexi’s inquest. 

I’m sure Maidstone and Tunbridge Wells Trust hoped we would just go away. Instead over the past few years we have had three independent reports conducted into our daughters care at Maidstone and Tunbridge Wells Trust by an independent midwife, neonatologist and obstetrician. Each of them found failings in the care myself and Lexi had. They heartbreakingly included statements like; “This failure to prompt urgent admission at this phone call fell below the reasonable standard expected of a body of midwives…. On the balance of probabilities if an ambulance had been called, admission would have been by 01:00, Alexa’s condition identified and stabilised and on the balance of probabilities changed the outcome.”  Essentially, if when I had telephoned concerned that my baby was sick I had been listened to, my beautiful Lexi could still be here. This is just one of the catalogue of heart breaking failings identified. 

But where do we go from there? None of this will bring Lexi back to us. We know we did everything we could. But the thing that keeps me from finding any path forward is knowing that nothing has been learnt from Lexi’s death by Maidstone and Tunbridge Wells Trust. No other babies could be saved by the failings that led to her death because they are being ignored. One option available to us was to sue the hospital for negligence. That would only have resulted in a financial sum awarded to us. The thought of it makes me feel sick. Money would not bring our daughter back nor would it help our grief. The solicitors could push for an apology but again a hollow apology would not help save any other babies. A statute of limitations means that you can only bring a negligence claim upto three years after the negligence occurred. That date will surpass next week and we have no plans to rush through a claim. All we ever wanted was for honesty. As the letter I sent to the trust said; “..for us to start grieving properly for our daughter we need to understand everything that occurred. We need to know whether all the processes and procedures that should have been followed were or were not. …Given that our daughter has died I don’t know what else could be more serious to require someone to follow up and ensure that a report is up to standard before presenting it to a family.”

The NHS is an amazing thing, please have no doubt we are very grateful for it. Especially to the staff at Great Ormond Street Hospital who did all they could to help Lexi when she arrived in such a critical state. But there are major failings within some trusts in the way they deal with investigating situations where something has gone wrong. As the inquiry into Shrewsbury and Telford Hospital NHS states “no learning appears to have been identified.” I echo the thoughts of one of the families  mentioned in this BBC article;  “We just wanted to get to the truth.” I wonder how much longer we will be forced to wait and what lengths we will have to go to in order to get the truth.

no words

No Words

There are no words.. Truly sometimes there aren’t. I haven’t found the right ones yet to describe the last few weeks. Weeks that have seen Andrew spending 7 days in intensive care. Three terrible days that saw Luke in hospital. And one day of having Luke in high dependency unit at one end of a hospital with Andrew in intensive care at the other end. I think if I wrote it all out it would sound too far fetched. Like i’m some sort of compulsive drama lama. But instead it is just the soul breaking life we seem to be living. Both are home now. I’ve had a chance to breathe again but that feeling of dread that everyone could die at any minute, that I had for so long after Lexi died, is creeping back in. The anxiety, stress and grief is quite frankly exhausting at times. We have therefore had to pull out of this weekends fundraising event, Run or Dye. I don’t think any of us have the energy for the full day it is and a quiet Sunday at home together is what we all really need.Thank you to those who are taking part in Run or Dye for The Lexi Mace Brighter Future Fund. I’m sure you will have an amazing day it is such a fun event. We really appreciate you taking part and fundraising. As i’m not able to fundraise through the Run or Dye event I have put together an online raffle to try and keep the momentum going. We are so close to £25k mark! Full details of the raffle and how you can win an Apple Watch will be on the next post. Please do share with your friends, families and colleagues. It is amazing how a simple share can help raise loads of money. Sophie x

Fundraising

One Day at GOSH

No matter how you fill it or where you live in the world, we all get the same, 24 hours in a day. 24 hours can feel like a lifetime or pass by in the blink of an eye. The average adult apparently spends 8-9 hours a day working. 7-8 hours sleeping. Roughly 1-2 hours eating. That leaves around 8 hours. 1-2 of those are spent moving, be that mindless movement from room to room or actual exercise. Leaving 2-6 hours of what is categorised as “other”; reading, scrolling through Instagram or maybe catching up on your favourite program. I’m wondering where in those 24 hours I would categorise answering the continual random questions my children ask, today’s example – “If an octopus lays such tiny eggs how is it able to find them all?” I’m pretty sure those questions fill at least a couple of hours a day! Prior to going on maternity leave, when I was pregnant with Lexi, I filled some of those hours in the day working at my brother-in-law’s structural and civil engineering consultancy, Abstruct Consulting. I had worked there for over three years when on my last day before I started maternity leave my waters broke. I had popped out of the office for a scheduled midwifes appointment fully expecting to return an hour later to finish off my work and eat some celebratory cake. I had spent months joking with my colleagues about me going into labour at work or trying to guess what I would call the baby. They had listened to all my pregnancy woes, especially my complaints of losing my hearing in my right ear, the bizarrest of pregnancy symptoms. They had shared in my excitement of being pregnant and when Lexi so tragically died, they shared too in our grief. They have been such incredible colleagues and when I told them about the fundraising we were doing in Lexi’s memory they knew they wanted to be involved. They had told me they wanted to take on the three peaks challenge which sounded hard enough but just to make it more of a challenge they were planning to complete all three peaks in just 24 hours! The 3 Peaks Challenge consists of climbing the country’s three highest mountains: Mount Snowdon (Wales, 1085m), Scafell Pike (England, 978m) and Ben Nevis (Scotland, 1345m). In just 24 hours it will involve them covering 26 miles of walking distance, 462 mile drive and 3064 metre ascent. It is a challenge that really will be testing their limits!They will be setting off on Friday 28th June, flying first to Glasgow and then driving to the first peak, Ben Nevis at 16:00. After Ben Nevis it is on to Scafell Pike before tackling the final peak, Snowdon which they aim to finish by 16:00 on Saturday 29th June. It is a real team effort as a self-guided group under the direction of one of the civil engineers, who as a scout leader has previously completed all three peaks. Six of them will be climbing, with two more of the team taking on the role of driver, ferrying the climbers between the peaks. I personally can’t imagine climbing one of those peaks let alone all three and all within 24hours! No 7-8 hours sleep, just what little sleep they can get whilst driving between the peaks! Makes me feel exhausted just thinking about it. In just 24 hours my 8 amazing colleagues will be overcoming so much to raise money and awareness of the incredible work Great Ormond Street Hospital do. Every day brings new challenges at Great Ormond Street Hospital. Every day, 618 children and young people from across the UK arrive for life-changing treatments. Every day, young lives hang in the balance as patients, families and staff battle the most complex illnesses. Every day, the brightest minds come together to achieve pioneering medical breakthroughs that change the lives of thousands of children – and change the world. Everything in this video was filmed across 24 hours at Great Ormond Street Hospital and shows how your support can help transform the lives of seriously ill children at the hospital. The money Abstruct raise will help the vital work that GOSH do everyday battling to save and improves the lives of the sickest of children. https://www.justgiving.com/fundraising/abstructthreepeaks

Sophie x

Fundraising

#forlexislegacy

I feel really touched by the incredible motivation of Alex. She gave birth to a beautiful little girl just a week before Lexi was born. Alex’s and my sister have been amazing friends since school and I know they were both so excited that their little sisters were having babies at the same time. Although I have never met Alex she has been so supportive of me since Lexi died. She has found motivation in running and weekly posts her park run with hastag #forlexislegacy. This Saturday will be Alex’s 50th park run since the birth of her daughter and she has signed up to put all the training to good use with 10km race. We are truly blown away by how much she has raised in such a short space of time with a month still to go till race day! I include the below from Alex’s JustGiving page. This is what our fundraising is all about. Set your own challenges, it doesn’t matter what others can do it, it is about what you are inspired and motivated to do ❤️Thank you Alex for being Lexi’s first BFF 👯

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“It still doesn’t come easy, and each Saturday morning that 5km is still a struggle, but every step Lexi is there, in my mind, in my legs in my motivation, knowing that this 10k would be my goal. 10k is not a marathon. To some, 10k is a warm up, but to me, it’s my marathon. And this marathon, darling Lexi is for you, for your legacy. Every step.”

https://www.justgiving.com/fundraising/forlexislegacy?fbclid=IwAR0nzHs63p7PtdTM7ddnNOnZNzDqgFeKZW1esEkZxKQjqZQgptL6QBXNaNI

Fundraising

One Hundred BFFs

🥳£20,894.21 raised in our first year of fundraising for Great Ormond Street Hospital and Children’s Charity!! It is all down to one very special little girl. Thank you Lexi for inspiring us ⭐️A new year of fundraising and this is something I’ve been very excited about announcing! This year is all about finding Lexi some BFFs: Brighter Future Fund Best Friends Forever!! The Lexi Mace Brighter Future Fund is looking for 100 BFFs who want to take on the challenge of raising £100 (or more!) over the course of a year. You can take part as an individual, a group of friends, with your colleagues at work, within your family or even a sports team. We will be here every step of the way to help you reach your goal. Here are a few ideas of ways you might reach your own BFF goal:- a bake it better cake sale- Bacon butty breakfast sale- Quiz night- Charity tuck shop at work- Office fines box (make a donation every time you break a rule.)- Wine and cheese night- Dress down or up day at work- Own clothes day at school- And of course there is many active challenges you could undertake; runs / cycle / walks / climbs / swim- It is surprising how quickly those pennies add up and you could reach your total just by giving up one shop bought coffee a week over the course of a year! These are just some of the many ideas you will receive along with access to a Facebook group where you can share ideas, successes and achievements on the way to your fundraising goal. Also on the group we will be telling you about some special ways to get involved with exclusive fundraising opportunities offered by GOSH. In the past week alone I’ve been sent details of how you could be a fundraiser at Formula 1 British Grand Prix in July (with access to watch all races on the day!!) there are some really exciting ways to be involved that we would love to share with our BFFs! It is an opportunity to be part of something amazing and to join together with Lexi’s other BFFs to raise a significant amount of money for GOSH in Lexi’s memory. The £100 you raise will build to an incredible £10,000 with the help of the other BFFs by next May! We are already planing a BFF thank you meet up to celebrate everyone’s success next year! So how can you get involved?If you want to be a part of it or get more information you can drop us a message via Facebook, Instagram, email (sophie@there-are-no-words.co.uk) or if you know it’s for you simply request to join the group: https://www.facebook.com/groups/1105893789607102/One year to raise One hundred pounds. Be part of our BFF 100 challenge! Sophie, Andrew, Annabelle, Lukie & Lexi ✨⭐️Please help us find our 100 BFFs by sharing this post with your friends and families ⭐️You can learn more about The Lexi Mace Brighter Future Fund and how the money raised is spent by Great Ormond Street Hospital and Children’s Charity​ here: https://there-are-no-words.co.uk/about/

Fundraising

London Marathon 2019

“If you are losing faith in human nature, go out and watch a marathon.”

Katherine Switzer

What an amazing day yesterday was. I have always loved the London Marathon, watching it on the tv from a young age and then on our doorstep when Andrew and I lived in London. Yesterday had to be my favourite marathon though, cheering on Rebecca, Emma and all the other incredible runners! The atmosphere and support for those running is so uplifting.

Rebecca, one of our runners, is my eldest sister and Lexi’s auntie. Words fail me to describe what a phenomenal support my sister has been since Lexi died. I will never forget phoning her the day Lexi had died. No words to describe the devastation and through tears she told me “We are here, whatever you need.” And from that moment she has been. She put aside her own grief and showed up time and again at my door. Driving me the day after Lexi died to the doctors, arranging for a special service with her vicar the night after Lexi died, stocking our fridge and freezer with food, doing my washing, and reminding me we when it all got too much that we would find a way. And she hasn’t stopped, she still always makes the effort to check how we are and gives us so much help and support.

Several years ago Rebecca joined a local group for joggers, a sort of couch to 5k. I think she would concur that prior to that running hadn’t really been Rebecca’s thing. She stuck with it and completed a 10k on one of the hottest days last year. It was after that she told me she had entered and got a ballot place for the Brighton Marathon to run in Lexi’s memory for GOSH. It was such a surprise and something she did all off her own back. The timing was perfect as earlier that week I was told we had been offered a place for Lexi’s fund for the London Marathon! As a once in a lifetime, bucket list tick what better marathon to chose to run than the London marathon! She entered and the charity place was confirmed!

Rebecca set about on such a dedicated training regime and has run over 300miles in her training! I would see her out running all over Sevenoaks no mater the weather. I was therefore completely devastated for her when just 10 days before race day she got a tear in her calf muscle. When I talked to her that day I could hear how upset she was after all her training it seemed she was going to have to pull out. But Rebecca is someone I’ve never seen give up at anything and so with a mass of strapping on her leg on Sunday she set off having had to do virtually no exercise in the past 10 days. She had lowered her expectation of times for the day and had one goal in mind, just to finish.

“When you run the marathon, you run against the distance, not against the other runners and not against the time.”

Haile Gebrselassie

She had barely slept the night prior to the race and I know was incredibly nervous, so when we saw her for the first time at mile 9, with a giant smile on her face, there was no better feeling! As the miles ticked on we were fortunate enough to see her at 4 more mile points. The pain was getting worse though and she had to stop at one point for physio. When we saw her at mile 23, I wished I could have hoped the railings and given her a piggy back. Seeing her in so much pain we were determined to see her one last time before the finish and at mile 25 we were able to surprise her and it was lovely to see her smiles had returned with the end in sight.

Seeing her finish the London Marathon, overcome all the pain and doubt she had has to be my favourite moment of this year of fundraising for GOSH. I literally couldn’t be prouder of her. So many points it would have been completely understandable for her to have pulled out prior to and even on the day when she was in pain.

Well done my amazing sister, I’m so incredibly proud of you and undoubtedly Lexi is too.

And we are also so incredibly proud of the amazing personal achievement for Emma, whose training has been thwarted with hip and back pain. I hope you are both proud of your achievement and can relax (once the aches have gone) knowing it is done now!

“…finishing a marathon isn’t just an athletic achievement. It’s a state of mind; a state that says anything is possible.”

John Hanc

Wednesday marks a year since The Lexi Mace Brighter Future Fund was founded. The aim of starting the fund was to find some happiness in the darkness. A way to help our family towards a brighter future, and a brighter future too for some of the sickest of children who pass through GOSH.

In the past year I have gained so many beautiful memories and moments of happiness through fundraising. And some how along the way we have together raised over £20,000. I am so grateful to everyone who has helped us in so many ways. Through spreading the word about our events, donating, sponsoring or arranging your own challenges.

Year 2 of The Lexi Mace Brighter Future Fund already looks jam packed. We have a team of 8 taking on 24 hour Three Peaks Challenge at the end of June, the same weekend we are looking forward to another great day at Run or Dye, then in July my incredible friend Jill is throwing herself out of a plane 🙈, Alex is running Maidstone Riverside 10k and we are putting a team together for RBC Race for kids! There are lots of other events in the pipeline and if you would like to, we would love to have you in any challenge you wish to undertake as part of The Lexi Mace Brighter Future Fund.

If Rebecca and Emma have inspired you to take on a marathon you have until 5pm on Friday (3rd May) to enter the ballot for 2020 London Marathon:

https://app.realbuzzregistrations.com/events/lmel/2020-vmlm-uk-ballot-dmJ7HzfdLMhV/login/?next=%2Fevents%2Flmel%2F2020-vmlm-uk-ballot-dmJ7HzfdLMhV%2F

You can also enter for a charity place for GOSH here:

https://www.gosh.org/get-involved/fundraising-events/virgin-money-london-marathon

Do let us know if you are applying either for a ballot or charity place. We would love to be cheering you on next year!

Sophie x

Fundraising

Busy week!

A busy week for fundraising this past week…My old colleagues at Abstruct Consulting enjoyed a lunch last week made by the lovely Sue. Sue is an amazing cook and used her culinary skills to help raise £200! Thank you to Sue and all the team at Abstruct for taking part in the lunch and raising a brilliant amount. On Monday, Pavla and I hosted a coffee morning to help boost our fundraising total for London Landmarks Half Marathon which we are taking part in this Sunday! The coffee morning raised £306. Thank you to everyone who took time out on their Monday morning to join us. Very pleased to say we have reached our fundraising goal for the 1/2 marathon – so just need to run it now 😬https://www.justgiving.com/fundraising/londonlandmarkshalfmarathon2019

Chronic Kidney Disease

Happy World Kidney Day!

Happy World Kidney Day! 🥳Apt that we are at Guy’s today for Andrew’s weekly checkup. It is now three months since he received his new kidney. He has graduated today to fortnightly appointments and another big step, he is starting his phased return to work on Monday! All this is thanks to his amazing donor and the brilliant team at Guy’s. #worldkidneyday#yesidonate