Browsing Category

Baby Loss Awareness

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.

Baby Loss Awareness

Broken and Strong

Today a wave of light has been travelling around the world remembering all the babies who left us too soon. People are invited to light a candle between 7pm and 8pm. As 7pm passes through the time zones the light in turn spreads around the world.

I haven’t found the right words this week to talk about losing Lexi. I’ve read, watched and listened to many grieving parents accounts of how losing a baby has changed their lives. This is mine. This is what baby loss looks like in my life.

Continue Reading

Baby Loss Awareness

Light

Last October I had many things on my mind. I was going to be super organised. I had got through September with my eldest daughter starting school, but now it was October I needed to get organised for Christmas! I wanted to make sure all the presents were bought and wrapped, and everything was ready by the end of November. I wanted to allow us a restful December ahead of Lexi’s Boxing day due date.

In the middle of October, I paused from my nesting fuelled Christmas preparations and lit a candle. A Facebook post had reminded me to light a candle for a wave of light. I paused and lit my candle. I thought about how lucky I was to have two children already and be nearly at the end of a third healthy pregnancy. I spent a few minutes staring at the candle light and then went back to scrolling through the pages of the ToysRus website. As I blew out that candle an hour later I felt truly blessed to not be the 1 in 4.

Baby and pregnancy loss awareness month starts tomorrow. I didn’t realise in previous years a whole month was dedicated to it. I had only heard before about the wave of light. Now surrounded by baby loss on all my social media applications I am seeing lots of posts. Posts reminding people to change their profile picture, different ways they can get involved and links to support. For many Baby Loss Awareness Week, running from 9th – 15th October, is the main focus of the month.

I went for a run today for the first time in years (I’d run out of excuses for starting my training for the half marathon I am running in March) and as I ran it kept churning over in my head. Why do we want to encourage people to be aware of baby and pregnancy loss? I am beginning to realise that I don’t need people to understand, nor do I want them to. Not completely. Because I don’t want anyone else to feel the pain inside my chest. The daydream that catches me off guard and flings me back to reality with a heartbreaking thump. I don’t want to allow people to even glimpse that agony because losing my baby has broken me. So why a month of reminding those around us of the loss we have experienced?

Those promoting and encourage others to join in baby and pregnancy loss awareness aren’t doing it because they want others to feel the pain or share the agony. They want people to understand how devastating it is for several reasons. Taken directly from Baby Loss Awareness website they say;

“Now in its 16th year, Baby Loss Awareness Week calls for tangible improvements in research, care and policy around bereavement support and highlights bereavement support and services available for anyone affected by the death of a baby at any stage.

A collaboration between more than 60 charities across the UK, Baby Loss Awareness Week is held from 9 to 15 October to raise awareness about the key issues affecting those who have experienced pregnancy loss or baby death in the UK.

Throughout the week bereaved parents, their families and friends, unite with each other and others across the world to commemorate the lives of babies who died during pregnancy, at or soon after birth and in infancy.”

And whilst I know that for many it will just be a moment to pause in their busy lives, like it was for me last year, I hope to help achieve greater awareness for those around me by taking part in Baby loss awareness week and sharing my own experience.